I have tingling in the hands which I think is circulation related. Had a bout of dizziness like I have never had before for a few days fairly recently. Brain fog and sometimes being tired for no reason. Weird twitches that come and go. I had a dose of hellachious cramps in my legs that were extremely severe at night. I couldn't get the cramps to go away by stretching the muscles like a normal cramp. One patch of numbness on my back that comes and goes. So far though if these are related to MS I can live with that. The eyes though do cause problems.
You need to have lesions on the brain or spine to have MS per Mayo Clinic and many hospitals around the country. This needs to be mentioned. These symptoms are of many diseases of Myesthenia Gravis, Parkinson’s, ALS, etc . Don’t mislead viewers.
@@Strutingeagle your symptoms are one of many symptoms of other diseases and Nuerological diseases/ disorders. Don’t let this video scare you into thinking it’s MS . See your Nuerologist/ Specialist for a evaluation.
@@frenchtoast7742 This video or others like it do not have me scared I have it. I have only recently started looking into it again because my brother has been diagnosed with ALS. Some of these MS videos pop up during research into that. Even if I did have MS, that would be nothing compared to those with ALS. No matter what your situation is, it can always be much worse.
those are awful triggers... it takes a while to put all of the pieces together, and we are our own best advocates... the number of doctors/specialists I have seen--the misdiagnoses and nearly deadly treatment, at long last found a neurologist who diagnosed me with a demyelinating disease with instructions to have a brain, torso and spine MRI every year.... fun fun, not.
How many times did I blame my dizziness on dehydration? How many times did I blame tripping or stumbling on my shoes? How long did I struggle with depression? Prickly pain? Well, that had to be dehydration right? Fatigue? Oh I must have to take vitamins. I write down my schedule? How can I forget what I have to do each day? Why can’t I recognize where I am even though I’ve been here so many times? The list goes on!!!
Me too! I have PPMS and told by doctors I ‘don’t drink enough water’ ‘getting too stressed’ ‘working too hard’ ‘have a damaged back due to childbirth’ ‘need to eat more fiber’ and get dizzy due to ‘low blood pressure’. I was also told I ‘suffer with migraines’. Maddening
literally me rn.. i used to blame all these things. symptoms are ramping up for me.. got an mri next week.. i hope for answers, been suspecting MS for a little bit now.
I've had all of these symptoms sadly. I left the workforce at 18 when I was diagnosed. It was aggressive and world shattering for my family who cares for me.
My progression of disability was also rapid. Diagnosed in 2020 at 62 years old. Ended up in a wheelchair in 2 months after diagnosis and unfortunately have been in wheelchair every since. This is a terrible disease. Stay strong
@joeh6244 it is a terrible disease. I did find some assistance with ampyra, riddlen (for the fatigue) and mavenclad. I rarely take pain pills for fear of not knowing what's going on. I'm glad 😊 you are encouraging others. You can do this...
I have all the symptoms. The dr at the ER said he thought that was what it was but my family Dr says it's ptsd.😔 I love your videos. They are very informative.
Thanks for watching! Definitely ask your family doctor for a referral or seek one on your own. Being our own advocates is very important. Perhaps your family doctor is right, but perhaps they are wrong too. Keep me posted!
When we are 100% sure of our bodies and what we are going through and that we have self diagnosed ourselves with MS with all of the symptoms and with all of the telltale signs, before during and after: why are our doctors so dense about it!
I'm 50 and am mid-diagnosis. My neurologist knows it's MS, just waiting on my cervical and lumbar MRI to know my progression. After reviewing my medical history - ulcerative colitis, endometriosis, adenomyosis, hypertension, a wreck that damaged right knee, a self-diagnosis of ADD, blah blah blah, he suspects that my elevated pain tolerance, my writing off cognitive issues as ADD,and how I have just accepted fatigue as a permanent fixture of my life--- that I've probably had MS for years. I have to wonder how many others do the same, and how much of myself I would still have if MS wasn't such a sneaky B***! THANKS. This felt like an appropriate vent area for this 🥹
Thanks for watching, “a sneaky B***!” Lol! You made me laugh! It can be sneaky… and subtle…and can come and go…. You might enjoy watching this where I talk a little about how I kind of ignored/accepted my symptoms ruclips.net/video/zwgvcgwDT8I/видео.html
Everything you said I’ve been going thru. Since 2014 when I had my knee replacement surgery I’ve complained about a TIGHTNESS in my calf area. I was blown off. Cog fog- 100%, I can’t focus on anything work related. Omg thanks for this video
I’m commenting again for the 2nd time today! Again, thank you for the video. You’re putting to words the feelings I’ve had for SO LONG. The compression in the bottoms of the legs, prickling pain, etc. it’s wild that you can put this to words because I explain my feelings to my husband and he’s like ….thats not a word…… so thank you. This is affirmative.
Thanks again for watching! I am not sure if the doctors have suggested bloodwork yet to check for deficiencies, but two you may want to ask about are vitamin D and B12.
I have them all! My double vision hasn't went away for 30 years now. Have it 24/7. Fatigue and depression a big part of my life. I went to the doctors for years and they always took bloods and they were always fine. Finally one doc said it could be ms as the numbness I alway had in my feet moved up to my waist. Finally diagnosed in 2006 after mri. When people ask me what symptons I have, my mind goes blank as there is many of them. Great video. Could have been written for me.
Sounds alot like myalgic encephalomylitis/ME that was poorly named chronic fatigue syndrome in the mid 1980s. Research found low natural killer cell function, inflammatory cytokines, increased infections, white matter lesions on mri's. Even autopsies found inflammation in the brain and spinal cord of ME pts, yet it is still mostly ignored. Some treatments can help some people such as antivirals and antibiotics but its mostly symptomatic treatments if one can tolerate them.
You have a new follower 🙏❤️. I love the way you described all symptoms related to MS in your videos. I have watched two of your videos and I have all the symptoms you’ve described and others too. This confirms that I am not that crazy 😔. I also have other conditions such as herniated/bulging discs, bone spurs, and pinched nerves in my cervical, Thoracic, and lumbar/sciatic areas, cervical disc disease with myelopathy, lumbar disc disease with radiculopathy, spinal enthesopathy and stenosis in cervical area, Fibromyalgia, and recently diagnosed with TOS, Cervical Dystonia. Have bursitis, tendonitis, tear, bone spur, etc. in different areas in both of my shoulders 😔, multiple join pains, and bilateral numbness, tingling, burning, etc. of arms, hands, legs, and feet. I have some doctors against any surgery to be performed on me because they say I will be in even more pain of what I have right now. I always said I have MS, but my neurologist said I don’t 🤷🏽♀️, but I keep researching and looking for solutions. I am afraid I am not taking the right medication I should take to stop or delay the condition. The medications I am taking for Fibromyalgia just put me to sleep, make me drowsy, cause more vision problems, and make my body and mind even more tired. Depression and anxiety is horrible. I have faith in God and still in the Doctors that I will get the proper treatment I deserve to feel better. It will not surprised me if I am diagnosed with MS because I’ve been dialing with all of these symptoms for more than 10 years, problem is that every day it is getting worse and even more after having COVID last year. My problem is that when people look at me (55 years) I may not show my age and/or my conditions. But I will continue to advocate for myself as you said 🙏. Again thank you so much and God bless.
Thanks so much! Welcome to the community! No, you are not crazy! Our symptoms are very real. It is just getting to the cause that can make us feel crazy. 😉 Keep asking for referrals or who to see next to get to the source of the trouble. As I am sure you are aware, it can take a long time to diagnose autoimmune conditions.
I'm finally seeing a neurologist after canceling with two in the last few years as both times I moved out of area. Thank you for this video! I realize now I've been having symptoms even longer than I realized! I'm on my 3rd GP that suspects I have MS. There are worse things it could be, so I am prepared for diagnosis ...
I have trouble with exercise since about 6 months before my MS was diagnosed back in November. Does anyone else suffer from extreme fatigue after exercise? I've been trying to take it easy with some slow walking because last time i pushed myself i ended up in bed the next day. 😕
It can be a challenge when we hear that exercise is needed but it zaps our energy. I find if I am eating well, getting good sleep, and practicing mindfulness it helps too. Thanks for watching!
I live with many of the symptoms you described in your video to varying degrees but the one symptom that is difficult for me to control is the unusual sensation of feeling wet, cold and damp legs, when they are DRY! The other sensation is waking up in the morning with an iced cold right hand. When I run cold water 💦 on the hand, the water feels warm. The truth is I don’t know what to expect from day to day but fortunately there’s one medication which helps me more than others.
Thanks for watching. I have heard of others having the sensation of being wet and being cold. It is so interesting that nerve damage can cause such strange sensations.
A have had weird symptoms for years but just recently have been taking the falling over thing more seriously. Well losing your job because you can’t stop falling over will do it. I thought it was all low blood sugar all this time but was recently told by a Doctor I don’t have hypoglycemia. When googling the causes for falling over MS came up and when I looked up the symptoms it was shocking. I have dealt with problems for years it would be a relief to finally know whats wrong.
I like your videos, I've just been diagnosed with MS. After watching your videos, your journey seems to be exactly what I have gone through. You give me hope! :)
@@EvenSoItIsWell Staying positive, your story is exactly what I've been through. The doctor was ready to do surgery for Spinal Stenosis, and I went for a second opinion and after years of pain and series of tests., I had an MS diagnosis. I have the drop foot, the numbness in the arm, back pain in the heat, balance problems. At least now I can head in the right direction to get better.
Undiagnosed, the top of my right foot developed numbness about a week ago after some excruciating occipital neuralgia pain. Its so subtle, I can still feel but its different when compared to my left foot.
@@EvenSoItIsWell I am! Like I said on an old comment of mine (on another video), I am getting a cervical spine MRI in a week. I really hope this provides some answers. I truly don't want it to be MS, it's a terrible disease and I know it causes so many people so much pain and sadness, but it feels very likely.
I'm not yet diagnosed with MS but some of my doctors are starting to suspect it. There is just too much that hasn't been explained by any of the other specialists yet. One of the most obvious to me, and to my PCP, is that I've been having periods of difficulty walking. Sometimes I can walk almost fine. But sometimes I feel as if I've forgotten how to walk. Like I have to concentrate so hard on every little movement to get my legs to keep stepping ahead. Like I'm both a puppeteer and a marionette. Like my brain and my body just don't quite connect. They're definitely not working in unison as one. And I've noticed that standing from a sitting position has become almost impossible. I've passed muscle testing from 4 different specialist. And yet my legs seem convinced that they can't get me up. Or more accurately, that my legs are not hearing the signal from my brain saying, "Get up!". Once I use my hands to push up on whatever is nearby my legs seem to hear the signal to engage. But until then they just stare back at my brain saying, "What?" As if they're wondering why my brain is so annoyed. And those are just some of the more recent things that none of the specialists have said could be from anyhing in their department. I do have a lot of other neurological stuff, too. Like my feet feeling wet so often that I've almost quit checking my socks. My spine specialist said it's not from my lumbar spine. But my rheumatologist said that weird neurological stuff like that could be from Fibromyalgia, which he diagnosed me with. Even he said that some of my weird symptoms are not from his department, though. Anyway, I could go on and on. And my PCP and I are going to send me to a neurologist soon. But I wanted to say that yes, I do relate to a lot of what you said. Most of it, actually. Especially the part about these weirenesses having the ability to come and go. I didn't realize they could do that. Mine definitely do. So I'm glad to hear I'm not just going insane. Thank you for making this video. I appreciate you.
Thanks for watching. You are definitely not insane. I am glad you are going to see a new neurologist. Keep advocating for yourself and looking for answers. Autoimmune diseases can be very tricky to diagnose.
I am so glad I ran across this video. As you were explaining your experiences with possible MS symptoms, it was as if you were reading paged from MY pain journal!!😮 Thank you for sharing !! I'm so grateful I found this video, she is truly awesome 👌 ❤ I hope and pray 🙏 that we ALL find the much needed diagnostic answers and support from our clinicians, during this frustrating and painful process. 😒 😢 God bless you in journey..
I can relate to the many years of doctors of many specialties. I am finally getting my first MRI to "rule out" MS. I'm not so sure it will be ruled out. I have pretty much every symptom you just listed and many more. I have been going to doctors for over 10 years with many of the same complaints and seen ortho, GI, rheumatology, hematology (had a PE and nearly died), physical therapy, gynecology, urogynecology.....and probably more.
Evenme I been hundreds times to doctors and to A&E for years nearly 5 years and they always send me home hundreds times they keep saying you are depressed they never did mri for me . Even in my school at year 9 i start falling and always my legs broke . I been to northern general hospital in Sheffield they are stupid and rubbish and to royal hallamshire hospital same rubbish then my dad arguing with them many times and making complaints and shouting then i seen one Arab good doctor he did for me mri and lumbar spine test then they found ms . I hate this hospital all doctors are stupid rubbish. After that a take me about 6 months to start treatment
Even me I been hundreds times to doctors and to A&E for years nearly 5 years and they always send me home hundreds times they keep saying you are depressed they never did mri for me . Even in my school at year 9 i start falling and always my legs broke . I been to northern general hospital in Sheffield they are stupid and rubbish and to royal hallamshire hospital same rubbish then my dad arguing with them many times and making complaints and shouting then i seen one Arab good doctor he did for me mri and lumbar spine test then they found ms . I hate this hospital all doctors are stupid rubbish. After that a take me about 6 months to start treatment
This is an excellent video. I too have a hard time explaining or understanding MS symtoms. I so appreciate you sharing this information. Thank you & God Bless.
I've come to utilize "speech to text" all the time. Or just printing things out on my printer rather than writing. Like grocery lists. Very convenient! But I am always conscious of keeping muscles exercised, knowing that "if I don't use it, I'll lose it!"
I just want to make the point that, although some muscles are "off grid," we can strengthen surrounding muscles to help achieve those difficult tasks. 🙂
I was diagnosed with Fibromyalgia some years ago, but things have gradually got worse. With some of the symptoms you have described. My fatigue is the worst. I'm drained all of the time. No matter what I do. How can I ask my dr to look at my diagnosis again? Don't get me wrong, fibromyalgia is awful, but a lot of symptoms can overlook others. I live like a hermit with the fatigue. I hate it
Hi Deborah. Thanks for watching. It is absolutely ok to ask your doctor questions about your diagnosis. You could write down your symptoms, how they have changed, and any questions your have about them. I agree fatigue is one of the most troubling symptoms. Check out my video with tips to manage fatigue ruclips.net/video/NUni1VTR3_s/видео.html
@@kimmyk1I share your son’s view. Although I am not a Dr, I was misdiagnosed with fibromyalgia 10+ years ago, until I was diagnosed with ‘Bilateral Superior Canal Dehiscence Syndrome’ I knew it was a cop out diagnosis at that time in my own case. I mean the term Fibromyalgia in Latin essentially means Tissue pain, pretty loose diagonals really😕✌️☺️
My trigeminal neuralgia was always on the left side of my mouth The pain was so bad that I always refer to it as the best diet you never want to have My pain was triggered by cold air, hitting my mouth, and luckily Fate worked in my favor that face mask had to be worn, so Nobody thought I was crazy for wearing the mask
Thank you hon for this. My maternal grandmother had MS and my sister has it. I am pretty sure I do too; I have all the symptoms. I am an Exercise/Yoga Therapist, and I really think that is what keeps me in control with this disease. Thank you and Blessings. Deedee
Yes, exercise beats drugs hands down. Those that go the drug route rarely seem to do as well, but then again it's difficult to convince most healthy people to exercise and so it's even harder to convince someone who's suffering physically!
I thank you so much for making your videos. They are very informative. I have been putting off seeing my doctor but due to your videos I have scheduled to see my doctor due to these symptoms.
This has been very helpful. I’ve had many of these and some like dizziness and balance issues with increasing regularity. I am awaiting my first MRI. I don’t know if anyone else has felt this but when my symptoms were bad, I was 100 percent convinced that I have MS and to be honest, I was relieved because it explained so much BUT…as my various issues improve I start to feel like a fraud. Like maybe I am just being a hypochondriac. My wife assures me that every symptom I have is valid and it’s becoming more problematic and more apparent but now I am actually worried that my MRI is going to be normal and I will be left with all of those questions again. I am not worried about the disease. I conquered Leukemia (CML) and have been receiving the all clear since 2000 and I have always been one of those “make the best of it” kind of guys and I am 57 so it’s not like I am planning my future. Did any of you feel this sort of “imposter syndrome” leading up to your diagnosis? Once you had convinced yourself that it all made sense?
Feeling impostor syndrome is common. As well as self doubt. When our symptoms come and go it can cause us to question our symptoms. Your wife is right, your symptoms are very valid!
@@EvenSoItIsWell thank you! I am at the point in life where I listen to whatever my wife tells me because she is almost always right but it makes me feel better to know that you agree. Neither of us knew anything about MS up until about a month ago and since then we’ve been learning as much as possible. It really helps to have people living it and teaching it so I really appreciate it!
@@JD-di7gu I will share that I am 56 and my husband is almost always right! Sounds like we have similar households! 😉 I am glad that you are finding my content helpful. Keep,reminding yourself - even so… it is well…
@@EvenSoItIsWell Haha similar home situations! Well yay us for having smart spouses! Thank you again! Just got my initial MRI scheduled so moving in the right direction.
I've felt imposter symptoms for the last 13 yrs. The worst is when doctors won't listen, once they know you deal with depression everything else is history
I have had the honor of dealing with trigeminal neuralgia, and there is nothing subtle about that. I have a neurologist that I do like but after I had gone through two rounds of gamma, knife surgery, they only had relief for four months each and then the pain came back, and my neurologist said he was not a pain doctor and could not help me At that point, I went to a acupuncturist rather than The brain surgery that Could provide Relief bye placing a Teflon sheet over the trigeminal nerve. However, I did not follow through with that surgery and resorted to acupuncture which I wholeheartedly recommend After five visits the pain what about 90% gone and I could stop caring Orajel in my pocket all day !!!
I’m mid diagnosis. I have my first MRI tomorrow. I was diagnosed with fibromyalgia approx 10 years ago. I have been back and forth to my doctor numerous times with new or progressive symptoms which have always been blamed on my fibro. I recently put my foot down and insisted on further investigation. I’m absolutely terrified of the outcome but I need answers. Thank you so much for this video ❤
Funny you mentioned looking for blisters, I was convinced I had a blister on my heel as it was so sore but definitely no blister there. I’ve checked several times but no blister has snuck up on me. When the weather is warm I frequently feel like it is raining, phantom rain syndrome I call it 😂
great video :D feared i had MS but my doctor thinks its stress :D but thankfully this video gave me peace, i don't think i have MS no more, but will keep looking out for symptoms , you are amazing and a strong woman! :D
Thanks for watching! Stress can do a lot of things, but keep advocating for yourself and seeking answers through second opinions or different kinds of doctors. It took about a year and 5 different doctors to reach my diagnosis.
@@Gspook19 excellent! Try to keep a log, it may help in hindsight. For instance the past few days I have seen an increase in spasticity in my left leg. We have also has increased humidity and some smoke from the Canadian wildfires in my area. I am sure both have contributed.
I get this weird sensation where it feels like cold water is being poured down one side of my head. I feel every bit of it. It doesn’t hurt but always makes me wonder why I get them
I am not diagnosed (and having a horrible time getting in to see a neuro) but I'm starting to suspect MS, and thinking back it may have started in 1990 when I was 18. Since then I've had every blood test for autoimmune disease (mostly negative, a mildly positive ANA), been diagnosed with fibromyalgia, and seen countless specialists for various symptoms that might last for a few months and then vanish, occasionally resurfacing months or years later. My cog fog was dx as ADHD; whether that's right or not, the meds have been helpful. It's been frustrating and I am sure my medical chart has notes about my hypochondria, but now that I recognize what it might be, I have hope that eventually I'll be able to be tested.
It's so very frustrating. I have blood work at every quarterly follow up with my RA specialist. It always comes back everything is fine but I have RA. However I know I have something underlying that's not been diagnosed. My siblings have labeled me as bipolar as my moods and anxiety due to my fluctuating pain levels. I have low tolerance noise and crowd stimulus. I also am sensitive to tempeture changes, and can't tolerate AC vents blowing on me sitting in a car. I could go on and on. One knows their body and if something doesn't feel right. You have to note all of these things regardless of how trivial you think they might be. I'm logging them under notes on my phone. I'm determined to fight to find out and prove I'm not a mental case and not spend the last ten years of my life in a lounge chair and wheel chair like my Mother did prior to her death.
Yes…I have had diagnosed MS 20 years . A lot of times I think my cellphone is ringing “vibrating” and I realised it was elsewhere! Feels exactly like a cell phone vibration
i’m currently in a phase of noting and recording many little weird signs i’ve been having - which when i’ve researched, have pointed to ms (or some type of nervous condition). the main one recently being a persistent thumb twitch that lasted a month and tremors when bending the same wrist. i strongly feel that my cognitive abilities have been decreasing over time - my short term memory is terrible, i really struggle to relay or note down new information or just speak from memory in general - i can’t talk a straight sentence basically. i had one scary instance of intense pain going down one side of my head down to my teeth (lasted about 10 seconds) - that was very alarming as it had never happened before but also hasn’t happened since. the list goes on but for years, specifically since a severe vertigo episode that lasted a day, i have not felt the same - always feeling tired, on the weak side, just off in general. but taking note and recording twitches etc should help in the future. i just feel a little silly calling the doctors about it as i’m quite young and i don’t feel that my symptoms are persistent enough, i know it would be a case of waiting and seeing how it goes. very informative video though, thank you!
Thanks for watching. Try not to feel silly calling your doctors or thinking you are too young. MS may strike between the ages of 20-50. Write down your symptoms and bring them with you to the doctor. They may be able to connect the dots and get to the bottom of your symptoms. Don’t be afraid to advocate for yourself and ask for second opinions or referrals too! Keep me posted! This video may be helpful too ruclips.net/video/zwgvcgwDT8I/видео.html
Omg, it’s like you’re describing my last 3 years! Been to doctors a few times, they check my blood, ‘everything is normal’ ‘nothing found’… ‘maybe you’re stressed, ‘mam?’ Or ‘you should lose some wait’ 😢 now my GP finally decided to send my to a neurologist because I’ve been having this ‘tingle feeling’ in my lower right leg which got really bad this summer. Have my appointment next Tuesday. I’m really scared now. I already have neurofibromatosis type 1, I really couldn’t handle having MS too.
@@silkedeconinck6894 thanks for watching. Try not to be too scared just yet. If it does turn out to be MS we can live well with it! I am 18+ years in and still doing well! Please keep me posted on how it goes.
100% what I'm going thru...everything you said I'm feeling one thing that is driving me crazy is the burning sensation on my body started in my feet now everywhere Shoulder blades burn like coals on my shoulder blades ...touching my skin hurts to I have noticed my right side of my body is the worst ...I have no energy...sleep helps alot
Ironic, I came across this video. I found old date book planners from 2017 until 2022. Not much written, making me wonder? Why the heck did I have this? Since 2022, I have been to every doctor imaginable. My datebook is full. I've had tests, numerous. But insurance dictates medical professionals, and even though I've requested MRI many times...2024, and still no success. I know something is wrong, but gaslighting has caused me to give up. Thank you for giving validation to those of us who have given up.
Great video! I also feel warm in my face when I experience these symptoms: Muscle aches, joint pain, weakness in arms I can't lift them longer than 15 to 20 seconds before they start hurting and getting tired, muscle spasms, balance issues when walking, cog fog, speech difficulties where I stumble over my words and have trouble recalling words, nap straight after work, tremors when I'm feeling cold and not cold, tingling crawly feeling like a bug is crawling on me, cold feet and sometimes hands . I also have ADHD just diagnosed. I had an evaluation done in 2015. I was 21ish and saw a neurologist. He did the needle test on me where he stuck me with needles and tested different parts of my body to check my nerves (I forgot what that test is called). The only thing he found was my left side of my body is weaker than my right but nothing significant. Nothing happend after that. Now this whole week I'm experiencing all same symptoms I mentioned earlier again to the point where I was crying last night from the pain and overwhelming sensations. My mom suggested I'm probably dehydrated and that helped a little drinking water/ electrolytes. Can dehydration really cause all the symptoms I'm experiencing? Is this enough to seek another evaluation from a different neurologist? Should I see a different specialty doctor? I'm lost on what or if I should so something about this. Sorry this is long and thank you for anyone who can guide me 😊
I have all of these symptoms you speak of for years and my GP always put it down to fibromyalgia which I was diagnosed with 10 years ago, I finally got referred for an MRI and was found to have a lesion on the right hemisphere of my brain but nothing else evident on the scan so now I'm having a scan every 6 months and a review of results with a neurologist every 6 months, he says he cannot diagnose me with MS right now but looks like I may progress enough in the future to be heading toward a diagnosis........can only manage myself symptomatically
Thanks for watching. Fibromyalgia can have many symptoms that are the same or similar to MS. It is pretty common to wait for a second relapse or appearance of lesions to confirm a diagnosis. Keep doing what you can manage your symptoms. There is so much we can do with diet, exercise, sleep, mindfulness, & supplements.
I just went to my doctor with leg pain on my left side. Having trouble lifting that leg. Pain shooting all the way down. Buzzing in my feet. But lately I've had brain fog, dizziness, and I've been tripping up and down stairs. I also have been slurring my words periodically, and swallow down the wrong pipe. I've been battling depression for years already. Hands go numb. Feet feel like they're on fire on my soles of my feet. She suggested an MRI right away. I'lll find out on Monday.
Dee Dee was my favorite doll I had as a child. Anyway, my Dad had progressive MS. Within 10 years he was totally paralyzed. It was got wrenching to watch his pain. Has feet crossed and he begged me too pull them apart. I wasn't strong enough. Anyway, I am now dealing with some of what he did. I have been diagnosed with Dementia, but wonder if it's MS. Thanks for your valuable video and God Bless You.
Thanks for watching. I am so sorry you watched you dad go through that. I can’t give medical advice, but cognitive difficulties can definitely be a part of MS and is worth mentioning to your doctor. I have another video on foods for nerve and brain health you may find helpful ruclips.net/video/u6DXhtTEU1Y/видео.html
I never considered MS but I have had severe burning in my feet for years. No diagnoses. Dr didn't look at my brain. Now I have blurred vision in my left eye that seems to be getting worse. First it was mild, and wasn't every day, but now it seems to be constant. My new glasses did not help, although in the Doctors office the 'prescription' was the right one at the time.. I am more frustrated with the vision thing than any other symptom. I am going to try to get my current doc to order an MRI.
The weirdest symptoms I had was change of smell. Everything smelled and tasted the same for 4 months. EVERYTHING. Peanut butter smelled like a bowel movement. Sweat smelled like yogurt. I struggled to eat anything except strongly flavored foods for months before diagnosis. This corrected itself after my first round of steroids.
I had an mri on brain but not my spine which I feel should have been done as well and it showed nothing on it however I have all of the symptoms you described when I have what I guess is a flare up!? The only time I had relief was when I was on a cortisone pack for a tooth infection that was treated with a root canal. Once I was off the meds for a week the symptoms came back again. My doctors keep dismissing me so I give up. It all started when I couldn’t see out of my eye one day for a few seconds. Then I started getting spasm through out my body which all went away except for one eye that still does it but no as bad. I still get tingling on left side of my face and nose and lips. I have a prickly sensation on foot that comes and goes. The cold wet sensation occasionally. Forgetfulness. Fatigue. My throat spasms sometimes too on occasion. Dizziness at times or vertigo. Arm will feel strange at times like it’s heavy. It’s all definitely neurological. I’ve been to two dentist. Two eye docs. Two doctors and they all think that as well. There are times when I see blurry or double in one eye. I’m like can y’all just help me here. Sigh. 😔 so frustrating. My primary doc said he’s going to set me up with a neurologist. So just going to have to wait and see. Thank you for the informative video.
Thanks for watching. Autoimmune and neurological disorders can be so challenging to diagnose. Keep advocating for yourself! Ask for second opinions and referrals. Say “who should I see next?” - “What are the next steps?” - “Who would you go,to next to address these symptoms?” Try not to get discouraged. It can take time and multiple doctors to find answers. Keep me posted on how it goes.
Omg. I have everyone you mention except the prickling. My feet, ankles. shins, thighs and now fingers and toes "freeze up" in pain. It's awful and will wake me up from a deep sleep. I used to have beautiful handwriting and now it's barely legible. My fingers are always one off the correct keys when I type. I have a different chronic health condition I have always attributed the symptoms to be from, but never with confidence. I know something else is going on.
I've been so interested in your videos. I am going to get an app....I just have so many symptoms and besides having the rare Klippel-Feil Syndrome I have on my medical chart a hoard of "I think you have...diagnosis: lupus, myasthenia gravis, liver and kidney enzymes suddenly going way way up or kidney disease (liver enzymes went away and back to normal after 8 months???). I do have a brain tumor (meningioma only) in the right cavernous sinus that is quite large. I've been dealing with terrible migraines labeled cluster headaches and trigeminal neuralgia. I can't possibly have allll of these things!!!! I really believe that I have MS and that the severity of the cervical spine condition was constantly hindering the diagnosis.
Yes, sometimes when I work out or do anything cardiovascular activity hiking , treadmill,spinning bike My feet feel numb and prickly Also experience wet sensation on my skin or burning prickly pain on my skin mostly thighs
I have been referred to neurology query ms. I have endometriosis, painful bladder syndrome, raynauds. I have been experiencing restless legs syndrome, hands tremors, pins and needles in my feet and now spreading up my legs and numbness in the legs. Chronic bowel issues, back pain, blurred vision and balance problems. my symptoms are getting worse rapidly. Could you give me advice on what I should bring/ write down for my first appointment, thanks. I and only 28 and I am worried what is going on.
Hi Lydia. Thanks for watching and for reaching out. First, I am sorry you are experiencing all this. You are so smart to think of writing things down to bring with you. I would definitely bring a list of doctor’s appointments for the past few years and any events that you thought you were odd. For instance I had a day once where I felt overwhelming fatigue when touring a college. I actually had to sit down. Also think of mental health issues too. There is something called Prodromal symptoms that may help your doctor. I will put a link to my video on this below. I would also bring a list of questions you have. Bring two copies of both, one for you and one for your doctor so you can review them together. Keep in mind they may not be able to go over every single symptom but it may be a helpful tool. The last thing to bring is another person. It is always helpful to have a second set of ears in the room. Then go out for lunch or dinner together to discuss what each of you heard. Best of luck and keep me posted on how it goes. ruclips.net/video/RkGFZ3W6lrQ/видео.html
Thank you for this. I have so many of these symtoms. I recently was diagnosed with intracranial hypertension but i just feel like something aint right. I tick so many of these boxes. Im due to see my neurologist soon so hopefully he can clear it up for me. Currently my left foot keep getting pins snf needles and same leg feels so weird and like numb inside. I cant explan it.
Thanks for watching Amy. Some of the symptoms of IH can be similar but it is definitely worth checking in with your doctors. Listening to our intuition is important.
I am going to my doctor today and hoping to be referred to a neurologist, I was dismissed last time with Magnesium Deficiency without so much as a test.
Thanks for watching Positive MSer. You are absolutely right, PPMS symptoms can be relentless and accumulating. They can also come on subtly but then they pile up!
My symptoms started last year. I had tingling and numbness in one of my hands., And then I had it in the other hand. I started to get stroke-like symptoms, and they took an EEG scan and didn't find anything at the time they took an MRI of my brain and there was a white spot on my brain ( or at least that's how they described it). Dr. pegg said that white spots come up all the time, it could be nothing. Then he retired. 🙄 I have muscle jerks, brain fog, one side of my face goes numb, I smell things that are not there, and I'm in constant pain at the same time. And yes it comes and goes with stress. I was diagnosed with fibromyalgia.
No diagnosis for me yet. Being worked up for burning in the feet and tingling in hands. Also having some numbness in the face and milder burning on my back. EMG was normal.
I am sorry you are experiencing additional symptoms. Keep advocating for yourself and asking your doctors for answers. I know it can be frustrating and frightening.
i feel like i walking on sponges, pain in between sho ulder blades, feelings like cold water running down my face, chest bothers me. i still waiting on mri. i been having symtoms since April, neorologist is slow
I have not been diagnosed yet. But I’ve been dealing with a plethora of symptoms you mentioned for years. I’ve seen so many different specialist but in June I finally got an appointment with a Rheumatologist. I’ve been thinking I may have MS. Thank you for your video, I feel like I’m going crazy and because no one can see what I’m experiencing, aside from the cog fog and trouble speaking at times, and the specialist saying I’m fine…it’s just hard to be taken seriously and believed.
I have recently had the term MS used by my neurologist. She also mentioned "White Matter" that was evident in a recent MRI. She has recommended a lumbar punch as a confirmation of MS. I do have some symptoms but would like your opinion on my next steps.
Thanks for watching Deanna! I can’t offer medical advice but I will encourage you to keep advocating for yourself and seeking answers. It may take some time as autoimmune diseases can be tricky to diagnose. I also encourage you to take exquisite care of yourself. There are so many things we can do support our bodies to be as healthy as possible. I follow a four pillar approach in addition to my medication. I eat a whole food plant based diet, exercise regularly, get good sleep, and practice mindfulness/kindness. Keep me posted on how it goes.
Hi Crystal, I am sorry you are not getting help. Please try to keep advocating for yourself by asking for second opinions and/or referrals until you find answers and help.
I have high anxiety and depression, my balance has effected me sometimes swallowing problems and high muscle twitching and had days of being off I looked oops and mispronounced words.
I don't know if I have ms or not. I saw you on utube discussing MS Hug. I started reading your comments. For almost two years I wake up with 5my ribs feeling they are in a crushing squeeze. Sometimes hard to breathe. I said i need a new mattress. They are expensive so i havent done it. . After about 10 minutes of walking around , 80% goes away but lately, my bra feels too tight all the time. I have a reason for that possibly. . I have carpal tunnel syndrome that's now in my arm. Numbness. I can't hardly hold a pen to write. So many other symptoms but I can explain each one away, , but put them all together, it worries me. With that info on the ms hug, that did it. I'm going to see a neurologist. I'm 79, so it's probably not likely, but reading you can have mild symptoms for years, then it raises its ugly head; I'm so glad I saw your video.
Thanks for watching. Definitely write down all the symptoms and bring them to your doctor. It is definitely worth getting checked out. Let me know how it goes!
Does anyone have white spots under their skin on their feet? Mine come and go. When I exercise I feel ill after, sometimes flu like aching all over or fatigued.
Thanks for watching. I haven’t had the white spots but have had post exercise fatigue. I found sipping really cold ice water when exercising and wearing a cooling vest help. This is the one I use ruclips.net/video/2Tk1DhuVVsg/видео.html
Thanks for watching. Sometimes it can be difficult to diagnose autoimmune conditions/diseases. Keep a log of your symptoms and bring it with you when you visit the doctor. This will help them to determine why tests to run. Good luck and keep me posted.
This is a good video. I have never been diagnosed with MS but I have dealt with symptoms for about 15 years. I did go and get a blood test and went to the eye doctor early on and they didn't find anything there. I wasn't even thinking MS at that time though. The last time I went to a doctor was about a year ago and he wanted to refer me to another doctor to get an MRI. He said he saw white blood cells in my eyes and thought I might have a more serious situation and he did not name it. I have had a gait problem years ago and it never came back. One arm felt tired and was shaky as hell for a time but it never came back. My eyes though have been coming and going the whole 15 years. One pupil is bigger than another at times. I get double vision frequently and sometimes double vision with just one eye and the other closed. Should I remain happily ignorant or at least hold onto the possibility I don't really have it or is it better to know?
Thanks for watching. It is definitely better to know! There are over 20 disease modifying therapies for MS now to slow down profession and treat symptoms. And if it is something else there is probably treatment you can get on. You can also start to make diet and lifestyle changes to support your health. I encourage you to keep seeking answers and asking for second opinions. Being an advocate for yourself and your health can be tiring and it can take time to reach a diagnosis, but it is much better to know so you can take steps to prevent progression.
@@Strutingeagle there is so much that can be done!! I am 15+ years into my MS journey and still doing well! In addition to my medication, I follow a whole food plant based diet, exercise regularly, get good sleep, and practice mindfulness/kindness. All of these are key to my health and wellbeing. 😊
@@EvenSoItIsWell I am glad you are doing well with it. I know of two people that eventually succumbed to it. I learned that it is not a fatal disease but oddly they did not make it. It must depend on how hard it hits different folks or if they get fluid in their lungs. This just reminded me, I choke on my spit all the time at night too. They had an active and healthy lifestyle. One was able to walk but the other was wheelchair bound eventually. This is a big downer but it happens. You are a very kind person indeed and thank you for your advice. Keep on keeping on.
I have many ms symptoms but here's two I wonder about... Excruciating cramp like pain in limbs (varies, could be both legs, one arm, etc)... its so bad I'll lay in bed stretching writhing tossing and crying until it passes. I believe this is one of the first symptoms I experienced many years ago. Strange tightening in my abdominal /pelvic area. Both tingly and tight. Swelling of legs and feet. Especially in heat. To the point none of my shoes fit. Besides these.. I was diagnosed with carpal tunnel in both wrists at 25... then went to dr for electric shock type pain down my neck into my shoulder. I had a newborn at the time and the pain was so sudden and intense I was afraid I'd drop him. Dr sent me for xray to check for arthritis which was negative so he gave pain meds. Maybe a year later went to ER with drop foot. On call neuro wanted to operate on my spine then and there but I said no and got a referral for second opinion three months out. It went away on its own so I canceled. I've been diagnosed also with interstitial cystitis due to constant urge to urinate but can't. But also sometimes will pee myself while coughing or laughing. Currently my right outer thigh is numb but also at times prickly hot and painful to touch. I get horrible migraines that start and eminate from the back of my neck /base of skull.. I know I'm leaving stuff out but after having many drs dismiss me or throw pain meds at me I've given up. Feel sure it's ms but now I'm just waiting til it's bad enough to diagnose
I am sorry you are experiencing so many symptoms. I can’t say if they are MS or not but as It can affect any part of the central nervous system, there can be many symptoms. The swelling of your feet doesn’t sound like a typical symptom. I encourage you to not wait but to bring this list to your doctor and continue to seek answers. Auto immune diseases can be very difficult to diagnose and can take time. Keep advocating for yourself. Ask for second opinions and referrals. Keep me posted.
@EvenSoItIsWell thanks for your response. Having done research, ive read that swelling can be a result of MS (erythromyalgia I think, forgive my spelling... or hot feet)... but then I don't see many people with ms naming this symptom. I also totally understand that no one but a doctor can give a diagnosis, it's just hard to find one who listens and will just do whatever is needed to diagnose or rule out. I was once even told by a doctor that I'm "too young to be in pain"... I know its important to advocate for yourself but as exhausted as I am still trying to work a full time job it seems insurmountable. Anyway, I'm 40 now so hopefully I'll get there. Your channel is great and I hope you're feeling well :)
I think I have MS...I have all the symptoms...I'm scared to get diagnosed... I don't want to know... I already have Crohn's disease... How much more can I take?
@@mindyg1960 oh Mandy. I can completely relate. I didn’t want to know or be diagnosed either. It is a frightening thing. It might not be MS. It might be something else that can be taken care of. If it is MS getting treatment and starting to make diet and lifestyle changes earlier is the best way to stave off disability and progression. I am 18 years into my journey with MS and still doing well! I encourage you to go to the doctor and seek answers.
Diagnosed exactly a year ago today, Previously in 2014 diagnosed with CIS.I had an episode of facial numbness and walking like I was drunk especially when walking over black and white floor tiles. Had settled down then my neurologist retired plus COVID changed the world and I was forgotten about. Fast forward to 2022 assaulted at work knocked out ,then over the next 16 months it was one thing after another subtle yes... Then one day climbing the stairs the pain I experienced was like getting shot in the hamstring area. I couldn't walk further than a couple of meters. Eventually I had a new neurologist and after he examined me he said in my opinion you've MS wow. Full head and spine MRI the next day. Results a fortnight later. Haven't worked since going through the process of I'll health retirement. Honestly everything you said in the video every single subtle symptom I had but put it down to work stress getting old or just tired. Male 55
Thanks for watching. How are you doing a year in? The first year or two can be times of adjustment where we feel ALL the emotions and that is completely normal.
Thanks for watching.There are multiple steps to diagnosing MS including ruling out other possible causes of the symptoms (lots of bloodwork), MRIs, having multiple relapses, possibly a spinal tap (lumbar puncture), and taking a full medical history and neurological examination. It can often take some time to diagnose. Currently the McDonald criteria is being used in most hospitals mstrust.org.uk/a-z/mcdonald-criteria
I have numbness on one leg and have 2 other autoimmune disease, my doctor is now suspecting I have MS, I am scheduled for an MRI on 4 days ! I am scared ! wish me good luck 😔
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Do you have other subtle symptoms associated with your MS?
I have tingling in the hands which I think is circulation related. Had a bout of dizziness like I have never had before for a few days fairly recently. Brain fog and sometimes being tired for no reason. Weird twitches that come and go. I had a dose of hellachious cramps in my legs that were extremely severe at night. I couldn't get the cramps to go away by stretching the muscles like a normal cramp. One patch of numbness on my back that comes and goes. So far though if these are related to MS I can live with that. The eyes though do cause problems.
You need to have lesions on the brain or
spine to have MS per Mayo Clinic and many hospitals around the country. This needs to be mentioned.
These symptoms are of many diseases of Myesthenia Gravis, Parkinson’s, ALS, etc .
Don’t mislead viewers.
@@Strutingeagle your symptoms are one of many symptoms of other diseases and Nuerological diseases/ disorders. Don’t let this video scare you into thinking it’s MS .
See your Nuerologist/ Specialist for a evaluation.
@@frenchtoast7742 This video or others like it do not have me scared I have it. I have only recently started looking into it again because my brother has been diagnosed with ALS. Some of these MS videos pop up during research into that. Even if I did have MS, that would be nothing compared to those with ALS. No matter what your situation is, it can always be much worse.
@Struttingeagle Thanks for watching. So sorry your brother has ALS. That is a tough diagnosis. I hope you find some relief from your symptoms.
noise and bright lights totally do me in.
Thanks for watching and commenting. I am currently in NYC and I think the hum of the city in general is affecting me. Fatigue and a bit more unsteady.
This could also be a sign of being on the autism spectrum.
those are awful triggers... it takes a while to put all of the pieces together, and we are our own best advocates... the number of doctors/specialists I have seen--the misdiagnoses and nearly deadly treatment, at long last found a neurologist who diagnosed me with a demyelinating disease with instructions to have a brain, torso and spine MRI every year.... fun fun, not.
@LosOGradysinMexico good on you for being a good self advocate.
How many times did I blame my dizziness on dehydration? How many times did I blame tripping or stumbling on my shoes? How long did I struggle with depression? Prickly pain? Well, that had to be dehydration right? Fatigue? Oh I must have to take vitamins. I write down my schedule? How can I forget what I have to do each day? Why can’t I recognize where I am even though I’ve been here so many times? The list goes on!!!
Thanks for watching. So familiar to so many of us! We have all blamed symptoms on something else. I think it is human nature.
Me too! I have PPMS and told by doctors I ‘don’t drink enough water’ ‘getting too stressed’ ‘working too hard’ ‘have a damaged back due to childbirth’ ‘need to eat more fiber’ and get dizzy due to ‘low blood pressure’. I was also told I ‘suffer with migraines’. Maddening
literally me rn.. i used to blame all these things. symptoms are ramping up for me.. got an mri next week.. i hope for answers, been suspecting MS for a little bit now.
@hollyberrytea good luck with the MRI. Let us know how it goes.
What were your results if you don't mind me asking @@hollyberrytea was this a brain MRI?
When you described the tightness is when I said ok I’m not crazy I haven’t even told anyone about that yet.
No you are not crazy! Thanks for watching!
I've had all of these symptoms sadly. I left the workforce at 18 when I was diagnosed. It was aggressive and world shattering for my family who cares for me.
My progression of disability was also rapid. Diagnosed in 2020 at 62 years old. Ended up in a wheelchair in 2 months after diagnosis and unfortunately have been in wheelchair every since. This is a terrible disease. Stay strong
@joeh6244 it is a terrible disease. I did find some assistance with ampyra, riddlen (for the fatigue) and mavenclad. I rarely take pain pills for fear of not knowing what's going on.
I'm glad 😊 you are encouraging others. You can do this...
who got you to the DR.? I've asked my wife for over a year after she hasome MS type symptoms? She refuses....
@BasicBeachCommunity1 unfortunately she has to be willing. Keep encouraging her.
I have all the symptoms. The dr at the ER said he thought that was what it was but my family Dr says it's ptsd.😔 I love your videos. They are very informative.
Thanks for watching! Definitely ask your family doctor for a referral or seek one on your own. Being our own advocates is very important. Perhaps your family doctor is right, but perhaps they are wrong too. Keep me posted!
When we are 100% sure of our bodies and what we are going through and that we have self diagnosed ourselves with MS with all of the symptoms and with all of the telltale signs, before during and after: why are our doctors so dense about it!
I'm 50 and am mid-diagnosis. My neurologist knows it's MS, just waiting on my cervical and lumbar MRI to know my progression. After reviewing my medical history - ulcerative colitis, endometriosis, adenomyosis, hypertension, a wreck that damaged right knee, a self-diagnosis of ADD, blah blah blah, he suspects that my elevated pain tolerance, my writing off cognitive issues as ADD,and how I have just accepted fatigue as a permanent fixture of my life--- that I've probably had MS for years. I have to wonder how many others do the same, and how much of myself I would still have if MS wasn't such a sneaky B***! THANKS. This felt like an appropriate vent area for this 🥹
Thanks for watching, “a sneaky B***!” Lol! You made me laugh! It can be sneaky… and subtle…and can come and go…. You might enjoy watching this where I talk a little about how I kind of ignored/accepted my symptoms
ruclips.net/video/zwgvcgwDT8I/видео.html
Very helpful. Thank you so much. I am a patient of Ms since almost 15 years. Finally my symptoms make sense.
Thanks so much for watching. I am glad you found it helpful.
This is a great video!🧡 These really are pretty sneaky symptoms, and I'm so glad you brought them up so people keep them in mind!
Thanks Dr. Gretchen! I appreciate you watching and giving feedback.
@theamberheardplaylist6768 not trying to be rude, but what the heck does this have to do with the subject at hand pray tell?
Everything you said I’ve been going thru. Since 2014 when I had my knee replacement surgery I’ve complained about a TIGHTNESS in my calf area. I was blown off. Cog fog- 100%, I can’t focus on anything work related. Omg thanks for this video
Thanks for watching. I hope you feel better and you find answers!
I’m commenting again for the 2nd time today! Again, thank you for the video. You’re putting to words the feelings I’ve had for SO LONG. The compression in the bottoms of the legs, prickling pain, etc. it’s wild that you can put this to words because I explain my feelings to my husband and he’s like ….thats not a word…… so thank you. This is affirmative.
Thanks again for watching! I am not sure if the doctors have suggested bloodwork yet to check for deficiencies, but two you may want to ask about are vitamin D and B12.
I have them all! My double vision hasn't went away for 30 years now. Have it 24/7. Fatigue and depression a big part of my life. I went to the doctors for years and they always took bloods and they were always fine. Finally one doc said it could be ms as the numbness I alway had in my feet moved up to my waist. Finally diagnosed in 2006 after mri. When people ask me what symptons I have, my mind goes blank as there is many of them. Great video. Could have been written for me.
Thanks so much for watching. I think it very common for us to have multiple symptoms and for diagnosis to be a challenge.
Thank you so much for your videos. I’ve had MS for 23 years and I’m still learning.
Thanks for watching!
I'm so glad I found your channel. Sending you so much love and gratitude 🦋
Thank you, sending love and gratitude back to you!
Sounds alot like myalgic encephalomylitis/ME that was poorly named chronic fatigue syndrome in the mid 1980s. Research found low natural killer cell function, inflammatory cytokines, increased infections, white matter lesions on mri's. Even autopsies found inflammation in the brain and spinal cord of ME pts, yet it is still mostly ignored. Some treatments can help some people such as antivirals and antibiotics but its mostly symptomatic treatments if one can tolerate them.
Yes! Very similar symptoms. Thanks for watching.
You have a new follower 🙏❤️. I love the way you described all symptoms related to MS in your videos. I have watched two of your videos and I have all the symptoms you’ve described and others too. This confirms that I am not that crazy 😔. I also have other conditions such as herniated/bulging discs, bone spurs, and pinched nerves in my cervical, Thoracic, and lumbar/sciatic areas, cervical disc disease with myelopathy, lumbar disc disease with radiculopathy, spinal enthesopathy and stenosis in cervical area, Fibromyalgia, and recently diagnosed with TOS, Cervical Dystonia. Have bursitis, tendonitis, tear, bone spur, etc. in different areas in both of my shoulders 😔, multiple join pains, and bilateral numbness, tingling, burning, etc. of arms, hands, legs, and feet. I have some doctors against any surgery to be performed on me because they say I will be in even more pain of what I have right now. I always said I have MS, but my neurologist said I don’t 🤷🏽♀️, but I keep researching and looking for solutions. I am afraid I am not taking the right medication I should take to stop or delay the condition. The medications I am taking for Fibromyalgia just put me to sleep, make me drowsy, cause more vision problems, and make my body and mind even more tired. Depression and anxiety is horrible. I have faith in God and still in the Doctors that I will get the proper treatment I deserve to feel better. It will not surprised me if I am diagnosed with MS because I’ve been dialing with all of these symptoms for more than 10 years, problem is that every day it is getting worse and even more after having COVID last year. My problem is that when people look at me (55 years) I may not show my age and/or my conditions. But I will continue to advocate for myself as you said 🙏. Again thank you so much and God bless.
Thanks so much! Welcome to the community! No, you are not crazy! Our symptoms are very real. It is just getting to the cause that can make us feel crazy. 😉
Keep asking for referrals or who to see next to get to the source of the trouble. As I am sure you are aware, it can take a long time to diagnose autoimmune conditions.
Nausea, eye pain, R. Leg pain. Thanks for your informative videos. Very helpful to describe how and what I'm experiencing. Great job!
Thanks for watching Keli. Sorry you are experiencing those icky symptoms.
I'm finally seeing a neurologist after canceling with two in the last few years as both times I moved out of area. Thank you for this video! I realize now I've been having symptoms even longer than I realized! I'm on my 3rd GP that suspects I have MS. There are worse things it could be, so I am prepared for diagnosis ...
Thanks for watching. Good luck with the neurologist. Keep me posted.
Same 8:13 I have gotten diagnosed with adhd and migraines and lower back issues, now I have excessive neck pain
It can be so frustrating can’t it?
I have all but one of the early symptoms you listed. have never thought to tie them together before. Thank you for this information.😊
You are welcome. Please know that these symptoms can be associated with other conditions as well.
I have trouble with exercise since about 6 months before my MS was diagnosed back in November. Does anyone else suffer from extreme fatigue after exercise? I've been trying to take it easy with some slow walking because last time i pushed myself i ended up in bed the next day. 😕
It can be a challenge when we hear that exercise is needed but it zaps our energy. I find if I am eating well, getting good sleep, and practicing mindfulness it helps too. Thanks for watching!
I live with many of the symptoms you described in your video to varying degrees but the one symptom that is difficult for me to control is the unusual sensation of feeling wet, cold and damp legs, when they are DRY! The other sensation is waking up in the morning with an iced cold right hand. When I run cold water 💦 on the hand, the water feels warm. The truth is I don’t know what to expect from day to day but fortunately there’s one medication which helps me more than others.
Thanks for watching. I have heard of others having the sensation of being wet and being cold. It is so interesting that nerve damage can cause such strange sensations.
A have had weird symptoms for years but just recently have been taking the falling over thing more seriously. Well losing your job because you can’t stop falling over will do it. I thought it was all low blood sugar all this time but was recently told by a Doctor I don’t have hypoglycemia. When googling the causes for falling over MS came up and when I looked up the symptoms it was shocking. I have dealt with problems for years it would be a relief to finally know whats wrong.
Thanks for watching. I am sorry you have had issues with falling. I hope you get answers soon!
I like your videos, I've just been diagnosed with MS. After watching your videos, your journey seems to be exactly what I have gone through. You give me hope! :)
@@steveybarra4523 hi Steve and welcome. Thanks for watching. How are you doing? The first year or two can be tough but it does get easier.
@@EvenSoItIsWell Staying positive, your story is exactly what I've been through. The doctor was ready to do surgery for Spinal Stenosis, and I went for a second opinion and after years of pain and series of tests., I had an MS diagnosis. I have the drop foot, the numbness in the arm, back pain in the heat, balance problems. At least now I can head in the right direction to get better.
Undiagnosed, the top of my right foot developed numbness about a week ago after some excruciating occipital neuralgia pain. Its so subtle, I can still feel but its different when compared to my left foot.
Thanks for watching. Definitely get it checked out. There can be many conditions that can cause neurological symptoms.
@@EvenSoItIsWell I am! Like I said on an old comment of mine (on another video), I am getting a cervical spine MRI in a week. I really hope this provides some answers. I truly don't want it to be MS, it's a terrible disease and I know it causes so many people so much pain and sadness, but it feels very likely.
Many, many people live well with MS and similar conditions. Wishing you the best. Keep me posted.
I'm not yet diagnosed with MS but some of my doctors are starting to suspect it. There is just too much that hasn't been explained by any of the other specialists yet.
One of the most obvious to me, and to my PCP, is that I've been having periods of difficulty walking. Sometimes I can walk almost fine. But sometimes I feel as if I've forgotten how to walk. Like I have to concentrate so hard on every little movement to get my legs to keep stepping ahead. Like I'm both a puppeteer and a marionette. Like my brain and my body just don't quite connect. They're definitely not working in unison as one.
And I've noticed that standing from a sitting position has become almost impossible. I've passed muscle testing from 4 different specialist. And yet my legs seem convinced that they can't get me up. Or more accurately, that my legs are not hearing the signal from my brain saying, "Get up!". Once I use my hands to push up on whatever is nearby my legs seem to hear the signal to engage. But until then they just stare back at my brain saying, "What?" As if they're wondering why my brain is so annoyed.
And those are just some of the more recent things that none of the specialists have said could be from anyhing in their department.
I do have a lot of other neurological stuff, too. Like my feet feeling wet so often that I've almost quit checking my socks. My spine specialist said it's not from my lumbar spine. But my rheumatologist said that weird neurological stuff like that could be from Fibromyalgia, which he diagnosed me with. Even he said that some of my weird symptoms are not from his department, though.
Anyway, I could go on and on. And my PCP and I are going to send me to a neurologist soon. But I wanted to say that yes, I do relate to a lot of what you said. Most of it, actually. Especially the part about these weirenesses having the ability to come and go. I didn't realize they could do that. Mine definitely do. So I'm glad to hear I'm not just going insane.
Thank you for making this video. I appreciate you.
Thanks for watching. You are definitely not insane. I am glad you are going to see a new neurologist. Keep advocating for yourself and looking for answers. Autoimmune diseases can be very tricky to diagnose.
I am so glad I ran across this video. As you were explaining your experiences with possible MS symptoms, it was as if you were reading paged from MY pain journal!!😮
Thank you for sharing !! I'm so grateful I found this video, she is truly awesome 👌 ❤ I hope and pray 🙏 that we ALL find the much needed diagnostic answers and support from our clinicians, during this frustrating and painful process. 😒 😢
God bless you in journey..
@CreoleCut4life thanks for watching. I am so glad you found it helpful!
I can relate to the many years of doctors of many specialties. I am finally getting my first MRI to "rule out" MS. I'm not so sure it will be ruled out. I have pretty much every symptom you just listed and many more. I have been going to doctors for over 10 years with many of the same complaints and seen ortho, GI, rheumatology, hematology (had a PE and nearly died), physical therapy, gynecology, urogynecology.....and probably more.
Thanks for watching. Wow, that is a lot. Keep advocating for yourself. Auto immune disease can be tricky to diagnose. Let me know how it goes.
Evenme I been hundreds times to doctors and to A&E for years nearly 5 years and they always send me home hundreds times they keep saying you are depressed they never did mri for me . Even in my school at year 9 i start falling and always my legs broke . I been to northern general hospital in Sheffield they are stupid and rubbish and to royal hallamshire hospital same rubbish then my dad arguing with them many times and making complaints and shouting then i seen one Arab good doctor he did for me mri and lumbar spine test then they found ms . I hate this hospital all doctors are stupid rubbish. After that a take me about 6 months to start treatment
Even me I been hundreds times to doctors and to A&E for years nearly 5 years and they always send me home hundreds times they keep saying you are depressed they never did mri for me . Even in my school at year 9 i start falling and always my legs broke . I been to northern general hospital in Sheffield they are stupid and rubbish and to royal hallamshire hospital same rubbish then my dad arguing with them many times and making complaints and shouting then i seen one Arab good doctor he did for me mri and lumbar spine test then they found ms . I hate this hospital all doctors are stupid rubbish. After that a take me about 6 months to start treatment
This is an excellent video. I too have a hard time explaining or understanding MS symtoms. I so appreciate you sharing this information. Thank you & God Bless.
Thanks for watching Tracey! Glad you found it helpful. Please feel free to share it.
I've come to utilize "speech to text" all the time. Or just printing things out on my printer rather than writing. Like grocery lists. Very convenient!
But I am always conscious of keeping muscles exercised, knowing that "if I don't use it, I'll lose it!"
100% agree with the use it or lose it mentally!
I just want to make the point that, although some muscles are "off grid," we can strengthen surrounding muscles to help achieve those difficult tasks. 🙂
I was diagnosed with Fibromyalgia some years ago, but things have gradually got worse. With some of the symptoms you have described. My fatigue is the worst. I'm drained all of the time. No matter what I do.
How can I ask my dr to look at my diagnosis again?
Don't get me wrong, fibromyalgia is awful, but a lot of symptoms can overlook others. I live like a hermit with the fatigue. I hate it
Hi Deborah. Thanks for watching. It is absolutely ok to ask your doctor questions about your diagnosis. You could write down your symptoms, how they have changed, and any questions your have about them.
I agree fatigue is one of the most troubling symptoms. Check out my video with tips to manage fatigue
ruclips.net/video/NUni1VTR3_s/видео.html
Or asking over and over it does all this
My son is a doctor. Stated fibromyalgia is only a term used when your doctor can’t figure out what’s wrong with you. Best of luck to you
@@kimmyk1I share your son’s view.
Although I am not a Dr, I was misdiagnosed with fibromyalgia 10+ years ago, until I was diagnosed with ‘Bilateral Superior Canal Dehiscence Syndrome’
I knew it was a cop out diagnosis at that time in my own case.
I mean the term Fibromyalgia in Latin essentially means Tissue pain, pretty loose diagonals really😕✌️☺️
My trigeminal neuralgia was always on the left side of my mouth The pain was so bad that I always refer to it as the best diet you never want to have My pain was triggered by cold air, hitting my mouth, and luckily Fate worked in my favor that face mask had to be worn, so Nobody thought I was crazy for wearing the mask
Oh interesting that a mask helps!
Thank you hon for this. My maternal grandmother had MS and my sister has it. I am pretty sure I do too; I have all the symptoms. I am an Exercise/Yoga Therapist, and I really think that is what keeps me in control with this disease. Thank you and Blessings. Deedee
Thanks for watching. Exercise and yoga are so great to help with symptoms.
Yes, exercise beats drugs hands down. Those that go the drug route rarely seem to do as well, but then again it's difficult to convince most healthy people to exercise and so it's even harder to convince someone who's suffering physically!
@@derekrunsagain exactly, my friend suffers so much, but she always tells me the pain is too bad to exercise!
@@derekrunsagain You are so right!
I thank you so much for making your videos. They are very informative. I have been putting off seeing my doctor but due to your videos I have scheduled to see my doctor due to these symptoms.
Thanks for watching. I am so glad you are going to get your symptoms checked. Please keep me posted on how it goes.
Thank you. I had some of these symptoms but thought I was wrong.. this really helped me 💞
Thank you for watching. I am so glad you found it helpful!
This has been very helpful. I’ve had many of these and some like dizziness and balance issues with increasing regularity. I am awaiting my first MRI. I don’t know if anyone else has felt this but when my symptoms were bad, I was 100 percent convinced that I have MS and to be honest, I was relieved because it explained so much BUT…as my various issues improve I start to feel like a fraud. Like maybe I am just being a hypochondriac. My wife assures me that every symptom I have is valid and it’s becoming more problematic and more apparent but now I am actually worried that my MRI is going to be normal and I will be left with all of those questions again. I am not worried about the disease. I conquered Leukemia (CML) and have been receiving the all clear since 2000 and I have always been one of those “make the best of it” kind of guys and I am 57 so it’s not like I am planning my future. Did any of you feel this sort of “imposter syndrome” leading up to your diagnosis? Once you had convinced yourself that it all made sense?
Feeling impostor syndrome is common. As well as self doubt. When our symptoms come and go it can cause us to question our symptoms. Your wife is right, your symptoms are very valid!
@@EvenSoItIsWell thank you! I am at the point in life where I listen to whatever my wife tells me because she is almost always right but it makes me feel better to know that you agree. Neither of us knew anything about MS up until about a month ago and since then we’ve been learning as much as possible. It really helps to have people living it and teaching it so I really appreciate it!
@@JD-di7gu I will share that I am 56 and my husband is almost always right! Sounds like we have similar households! 😉 I am glad that you are finding my content helpful. Keep,reminding yourself - even so… it is well…
@@EvenSoItIsWell Haha similar home situations! Well yay us for having smart spouses! Thank you again! Just got my initial MRI scheduled so moving in the right direction.
I've felt imposter symptoms for the last 13 yrs. The worst is when doctors won't listen, once they know you deal with depression everything else is history
I have had the honor of dealing with trigeminal neuralgia, and there is nothing subtle about that. I have a neurologist that I do like but after I had gone through two rounds of gamma, knife surgery, they only had relief for four months each and then the pain came back, and my neurologist said he was not a pain doctor and could not help me At that point, I went to a acupuncturist rather than The brain surgery that Could provide Relief bye placing a Teflon sheet over the trigeminal nerve. However, I did not follow through with that surgery and resorted to acupuncture which I wholeheartedly recommend After five visits the pain what about 90% gone and I could stop caring Orajel in my pocket all day !!!
Thanks for watching. I am so sorry you had that happen. Others have told me how difficult it is. I am glad you found relief!
I’m mid diagnosis. I have my first MRI tomorrow. I was diagnosed with fibromyalgia approx 10 years ago. I have been back and forth to my doctor numerous times with new or progressive symptoms which have always been blamed on my fibro. I recently put my foot down and insisted on further investigation. I’m absolutely terrified of the outcome but I need answers. Thank you so much for this video ❤
@@hilarytaylor8149 thanks for watching. Good on you for being your own advocate. Keep me posted on how it goes.
Funny you mentioned looking for blisters, I was convinced I had a blister on my heel as it was so sore but definitely no blister there. I’ve checked several times but no blister has snuck up on me. When the weather is warm I frequently feel like it is raining, phantom rain syndrome I call it 😂
Oh interesting, phantom rain! That is a new one for me.
I get that too feels like drops of rain hitting me but nothing really there.
great video :D feared i had MS but my doctor thinks its stress :D but thankfully this video gave me peace, i don't think i have MS no more, but will keep looking out for symptoms , you are amazing and a strong woman! :D
Thanks for watching! Stress can do a lot of things, but keep advocating for yourself and seeking answers through second opinions or different kinds of doctors. It took about a year and 5 different doctors to reach my diagnosis.
@@EvenSoItIsWell i will, my doctor said same thing, if it keeps happening he will send me to MRI
@@Gspook19 excellent! Try to keep a log, it may help in hindsight. For instance the past few days I have seen an increase in spasticity in my left leg. We have also has increased humidity and some smoke from the Canadian wildfires in my area. I am sure both have contributed.
@@EvenSoItIsWell amazing idea! WELL IND Denmark humidity is insane allways , and we have a freaking hot summer
I get this weird sensation where it feels like cold water is being poured down one side of my head. I feel every bit of it. It doesn’t hurt but always makes me wonder why I get them
Oh how interesting. I have heard of others getting a wet or cold feeling. I hope it isn't too disruptive. Thanks for watching.
I am not diagnosed (and having a horrible time getting in to see a neuro) but I'm starting to suspect MS, and thinking back it may have started in 1990 when I was 18. Since then I've had every blood test for autoimmune disease (mostly negative, a mildly positive ANA), been diagnosed with fibromyalgia, and seen countless specialists for various symptoms that might last for a few months and then vanish, occasionally resurfacing months or years later. My cog fog was dx as ADHD; whether that's right or not, the meds have been helpful. It's been frustrating and I am sure my medical chart has notes about my hypochondria, but now that I recognize what it might be, I have hope that eventually I'll be able to be tested.
Thanks for watching. So sorry your are experiencing all that. Keep advocating for yourself!
It's so very frustrating. I have blood work at every quarterly follow up with my RA specialist. It always comes back everything is fine but I have RA. However I know I have something underlying that's not been diagnosed. My siblings have labeled me as bipolar as my moods and anxiety due to my fluctuating pain levels. I have low tolerance noise and crowd stimulus. I also am sensitive to tempeture changes, and can't tolerate AC vents blowing on me sitting in a car. I could go on and on. One knows their body and if something doesn't feel right. You have to note all of these things regardless of how trivial you think they might be. I'm logging them under notes on my phone. I'm determined to fight to find out and prove I'm not a mental case and not spend the last ten years of my life in a lounge chair and wheel chair like my Mother did prior to her death.
@@DannaK247 absolutely! You are so right. We know our bodies and need to advocate for ourselves.
You need a spinal tap..and you get an appmnt with neurologist quickly tell them it's an emergency.
I have cell phone viberations in my legs and stomach did anyone ever have this symptom?
I have heard others report they have tremors. Perhaps your vibrations muscle tremors?
thank you@@EvenSoItIsWell
Yes…I have had diagnosed MS 20 years . A lot of times I think my cellphone is ringing “vibrating” and I realised it was elsewhere! Feels exactly like a cell phone vibration
@chrisnutter6933 so fascinating that we can get that buzzing vibration.
Yes. It feels strange.
i’m currently in a phase of noting and recording many little weird signs i’ve been having - which when i’ve researched, have pointed to ms (or some type of nervous condition). the main one recently being a persistent thumb twitch that lasted a month and tremors when bending the same wrist. i strongly feel that my cognitive abilities have been decreasing over time - my short term memory is terrible, i really struggle to relay or note down new information or just speak from memory in general - i can’t talk a straight sentence basically. i had one scary instance of intense pain going down one side of my head down to my teeth (lasted about 10 seconds) - that was very alarming as it had never happened before but also hasn’t happened since. the list goes on but for years, specifically since a severe vertigo episode that lasted a day, i have not felt the same - always feeling tired, on the weak side, just off in general. but taking note and recording twitches etc should help in the future. i just feel a little silly calling the doctors about it as i’m quite young and i don’t feel that my symptoms are persistent enough, i know it would be a case of waiting and seeing how it goes. very informative video though, thank you!
Thanks for watching. Try not to feel silly calling your doctors or thinking you are too young. MS may strike between the ages of 20-50. Write down your symptoms and bring them with you to the doctor. They may be able to connect the dots and get to the bottom of your symptoms. Don’t be afraid to advocate for yourself and ask for second opinions or referrals too! Keep me posted!
This video may be helpful too
ruclips.net/video/zwgvcgwDT8I/видео.html
Omg, it’s like you’re describing my last 3 years! Been to doctors a few times, they check my blood, ‘everything is normal’ ‘nothing found’… ‘maybe you’re stressed, ‘mam?’ Or ‘you should lose some wait’ 😢 now my GP finally decided to send my to a neurologist because I’ve been having this ‘tingle feeling’ in my lower right leg which got really bad this summer. Have my appointment next Tuesday. I’m really scared now. I already have neurofibromatosis type 1, I really couldn’t handle having MS too.
@@silkedeconinck6894 thanks for watching. Try not to be too scared just yet. If it does turn out to be MS we can live well with it! I am 18+ years in and still doing well! Please keep me posted on how it goes.
Thank you for making this video. It really helped me.
Thanks for watching! I am glad you found it helpful.
100% what I'm going thru...everything you said I'm feeling one thing that is driving me crazy is the burning sensation on my body started in my feet now everywhere
Shoulder blades burn like coals on my shoulder blades ...touching my skin hurts to
I have noticed my right side of my body is the worst ...I have no energy...sleep helps alot
It s amazing how MS can effect any part of the body, isn’t it? Thanks for watching.
Thanks for sharing! I am managing MS for 9 yrs now..
Thanks for watching! How are you doing after 9 years?
@@EvenSoItIsWell I am doing pretty well.. have my chemo session once in 9-12 months. That has been working for me.
@@EvenSoItIsWell I think am not too bad.. initially had multiple episodes but since I started taking Rituximab it has been stable.
Hopefully patients are on high orders of b12…. B12 I think is a huge part of correcting these symptoms..
Great video, Thank you
@@nuemiaharper3265 thanks for watching!
Ironic, I came across this video. I found old date book planners from 2017 until 2022. Not much written, making me wonder? Why the heck did I have this? Since 2022, I have been to every doctor imaginable. My datebook is full. I've had tests, numerous. But insurance dictates medical professionals, and even though I've requested MRI many times...2024, and still no success. I know something is wrong, but gaslighting has caused me to give up. Thank you for giving validation to those of us who have given up.
Thanks for watching. I am sorry you haven’t been able to get answers.
Great video! I also feel warm in my face when I experience these symptoms: Muscle aches, joint pain, weakness in arms I can't lift them longer than 15 to 20 seconds before they start hurting and getting tired, muscle spasms, balance issues when walking, cog fog, speech difficulties where I stumble over my words and have trouble recalling words, nap straight after work, tremors when I'm feeling cold and not cold, tingling crawly feeling like a bug is crawling on me, cold feet and sometimes hands . I also have ADHD just diagnosed. I had an evaluation done in 2015. I was 21ish and saw a neurologist. He did the needle test on me where he stuck me with needles and tested different parts of my body to check my nerves (I forgot what that test is called). The only thing he found was my left side of my body is weaker than my right but nothing significant. Nothing happend after that. Now this whole week I'm experiencing all same symptoms I mentioned earlier again to the point where I was crying last night from the pain and overwhelming sensations. My mom suggested I'm probably dehydrated and that helped a little drinking water/ electrolytes. Can dehydration really cause all the symptoms I'm experiencing? Is this enough to seek another evaluation from a different neurologist? Should I see a different specialty doctor? I'm lost on what or if I should so something about this. Sorry this is long and thank you for anyone who can guide me 😊
I am sorry you are experiencing such difficulties. Yes, please seek another option. Keep advocating for yourself.
Very informative. Loved it! ❤
Thanks for watching.
I have a diagnosis of fibromyalgia but I'm unsure I can relate to this so badly
Many of the symptoms overlap.
They need you to do a Ted talk!!🙏
I actually have considered it! 😉
Agreed!
I have all of these symptoms you speak of for years and my GP always put it down to fibromyalgia which I was diagnosed with 10 years ago, I finally got referred for an MRI and was found to have a lesion on the right hemisphere of my brain but nothing else evident on the scan so now I'm having a scan every 6 months and a review of results with a neurologist every 6 months, he says he cannot diagnose me with MS right now but looks like I may progress enough in the future to be heading toward a diagnosis........can only manage myself symptomatically
Thanks for watching. Fibromyalgia can have many symptoms that are the same or similar to MS. It is pretty common to wait for a second relapse or appearance of lesions to confirm a diagnosis. Keep doing what you can manage your symptoms. There is so much we can do with diet, exercise, sleep, mindfulness, & supplements.
I just went to my doctor with leg pain on my left side. Having trouble lifting that leg. Pain shooting all the way down. Buzzing in my feet. But lately I've had brain fog, dizziness, and I've been tripping up and down stairs. I also have been slurring my words periodically, and swallow down the wrong pipe. I've been battling depression for years already. Hands go numb. Feet feel like they're on fire on my soles of my feet. She suggested an MRI right away. I'lll find out on Monday.
@@Wubbajan thanks for watching. I am sorry you have been dealing with all that. I hope you can find some answers. Keep posted on how it goes!
Dee Dee was my favorite doll I had as a child. Anyway, my Dad had progressive MS. Within 10 years he was totally paralyzed. It was got wrenching to watch his pain. Has feet crossed and he begged me too pull them apart. I wasn't strong enough. Anyway, I am now dealing with some of what he did. I have been diagnosed with Dementia, but wonder if it's MS. Thanks for your valuable video and God Bless You.
Thanks for watching. I am so sorry you watched you dad go through that. I can’t give medical advice, but cognitive difficulties can definitely be a part of MS and is worth mentioning to your doctor. I have another video on foods for nerve and brain health you may find helpful
ruclips.net/video/u6DXhtTEU1Y/видео.html
🙏🙏🙏
@@EvenSoItIsWell Thanks so much. I will check your video out. Have a Blessed Life, Barb
@@releasingendorphins232 thanks for watching Barb!
Thanks sooo much for putting this together. I just subscribed !
Thanks for watching and subscribing!
I never considered MS but I have had severe burning in my feet for years. No diagnoses. Dr didn't look at my brain. Now I have blurred vision in my left eye that seems to be getting worse. First it was mild, and wasn't every day, but now it seems to be constant. My new glasses did not help, although in the Doctors office the 'prescription' was the right one at the time.. I am more frustrated with the vision thing than any other symptom. I am going to try to get my current doc to order an MRI.
Thanks for watching. I am glad you are advocating for yourself and asking for more tests. Please keep me posted on how it goes.
The weirdest symptoms I had was change of smell. Everything smelled and tasted the same for 4 months. EVERYTHING.
Peanut butter smelled like a bowel movement. Sweat smelled like yogurt.
I struggled to eat anything except strongly flavored foods for months before diagnosis. This corrected itself after my first round of steroids.
Wow! That is a new one on me. I have experienced strange smells but not tastes. Glad it resolved after the steroids!
I had an mri on brain but not my spine which I feel should have been done as well and it showed nothing on it however I have all of the symptoms you described when I have what I guess is a flare up!? The only time I had relief was when I was on a cortisone pack for a tooth infection that was treated with a root canal. Once I was off the meds for a week the symptoms came back again. My doctors keep dismissing me so I give up. It all started when I couldn’t see out of my eye one day for a few seconds. Then I started getting spasm through out my body which all went away except for one eye that still does it but no as bad. I still get tingling on left side of my face and nose and lips. I have a prickly sensation on foot that comes and goes. The cold wet sensation occasionally. Forgetfulness. Fatigue. My throat spasms sometimes too on occasion. Dizziness at times or vertigo. Arm will feel strange at times like it’s heavy. It’s all definitely neurological. I’ve been to two dentist. Two eye docs. Two doctors and they all think that as well. There are times when I see blurry or double in one eye. I’m like can y’all just help me here. Sigh. 😔 so frustrating. My primary doc said he’s going to set me up with a neurologist. So just going to have to wait and see. Thank you for the informative video.
Thanks for watching. Autoimmune and neurological disorders can be so challenging to diagnose. Keep advocating for yourself! Ask for second opinions and referrals. Say “who should I see next?” - “What are the next steps?” - “Who would you go,to next to address these symptoms?”
Try not to get discouraged. It can take time and multiple doctors to find answers. Keep me posted on how it goes.
Omg. I have everyone you mention except the prickling. My feet, ankles. shins, thighs and now fingers and toes "freeze up" in pain. It's awful and will wake me up from a deep sleep. I used to have beautiful handwriting and now it's barely legible. My fingers are always one off the correct keys when I type.
I have a different chronic health condition I have always attributed the symptoms to be from, but never with confidence. I know something else is going on.
Thanks for watching. Many conditions can have similar symptoms, but it is definitely worth getting them checked out. Keep advocating for yourself. 😊
Thank you!!!
You’re welcome! Thanks for watching!
Thank you 👋 😊
6:00 literally still always taking off my shoe to look for pebbles that aren’t there, even after diagnosis.
Yep! Is an MS thing. 😉
I've been so interested in your videos. I am going to get an app....I just have so many symptoms and besides having the rare Klippel-Feil Syndrome I have on my medical chart a hoard of "I think you have...diagnosis: lupus, myasthenia gravis, liver and kidney enzymes suddenly going way way up or kidney disease (liver enzymes went away and back to normal after 8 months???). I do have a brain tumor (meningioma only) in the right cavernous sinus that is quite large. I've been dealing with terrible migraines labeled cluster headaches and trigeminal neuralgia. I can't possibly have allll of these things!!!! I really believe that I have MS and that the severity of the cervical spine condition was constantly hindering the diagnosis.
Wow! Keep advocating for yourself! I hope you find answers.
Yes, sometimes when I work out or do anything cardiovascular activity hiking , treadmill,spinning bike
My feet feel numb and prickly
Also experience wet sensation on my skin or burning prickly pain on my skin mostly thighs
I have heard of the wet sensation. That must be maddening.
I have been referred to neurology query ms. I have endometriosis, painful bladder syndrome, raynauds. I have been experiencing restless legs syndrome, hands tremors, pins and needles in my feet and now spreading up my legs and numbness in the legs. Chronic bowel issues, back pain, blurred vision and balance problems. my symptoms are getting worse rapidly. Could you give me advice on what I should bring/ write down for my first appointment, thanks. I and only 28 and I am worried what is going on.
Hi Lydia. Thanks for watching and for reaching out. First, I am sorry you are experiencing all this. You are so smart to think of writing things down to bring with you. I would definitely bring a list of doctor’s appointments for the past few years and any events that you thought you were odd. For instance I had a day once where I felt overwhelming fatigue when touring a college. I actually had to sit down. Also think of mental health issues too. There is something called Prodromal symptoms that may help your doctor. I will put a link to my video on this below.
I would also bring a list of questions you have.
Bring two copies of both, one for you and one for your doctor so you can review them together. Keep in mind they may not be able to go over every single symptom but it may be a helpful tool.
The last thing to bring is another person. It is always helpful to have a second set of ears in the room. Then go out for lunch or dinner together to discuss what each of you heard.
Best of luck and keep me posted on how it goes.
ruclips.net/video/RkGFZ3W6lrQ/видео.html
I have most of these symptoms, but did not get a diagnosis. The doctors did not say anything why I am suffering.
I am sorry you are experiencing symptoms. Please ask for second opinions and referrals.
Thank you for this. I have so many of these symtoms. I recently was diagnosed with intracranial hypertension but i just feel like something aint right. I tick so many of these boxes. Im due to see my neurologist soon so hopefully he can clear it up for me. Currently my left foot keep getting pins snf needles and same leg feels so weird and like numb inside. I cant explan it.
Thanks for watching Amy. Some of the symptoms of IH can be similar but it is definitely worth checking in with your doctors. Listening to our intuition is important.
I am going to my doctor today and hoping to be referred to a neurologist, I was dismissed last time with Magnesium Deficiency without so much as a test.
@@melissapete917 oh no. It can be so frustrating when you feel dismissed. Please let me know how it goes.
Thanks a lot
Thanks for watching!
Beautiful hair!
Thanks so much!
it seems to me that physical exercises replace the development of the disease. My horizontal bar weighs a roller for the press, I do the bar every day
Good on you for exercising every day!
Fatigue kicks you when you don't want it to.
@@timlittle1286 yep. It can be sneaky.
I enjoyed this informative clip but please don’t forget about us with PPMS. Our symptoms don’t ’come And go’, unfortunately
Thanks for watching Positive MSer. You are absolutely right, PPMS symptoms can be relentless and accumulating. They can also come on subtly but then they pile up!
18 years for me before I was properly diagnosed
Wow, that is along time. I’m glad you finally got answers. I hope you are doing well now.
My symptoms started last year. I had tingling and numbness in one of my hands., And then I had it in the other hand. I started to get stroke-like symptoms, and they took an EEG scan and didn't find anything at the time they took an MRI of my brain and there was a white spot on my brain ( or at least that's how they described it). Dr. pegg said that white spots come up all the time, it could be nothing. Then he retired. 🙄 I have muscle jerks, brain fog, one side of my face goes numb, I smell things that are not there, and I'm in constant pain at the same time. And yes it comes and goes with stress. I was diagnosed with fibromyalgia.
Thanks for watching Kristi! Fibromyalgia is another one with really similar symptoms.
I have a friend that was diagnosed with fibromyalgia, then diagnosed with Ms a few years later
@@kristiknapp4478 oh interesting. Are you thinking you have MS as well?
No diagnosis for me yet. Being worked up for burning in the feet and tingling in hands. Also having some numbness in the face and milder burning on my back. EMG was normal.
@@beardy7124 thanks for watching Dan. I hope you find answers soon!
I need my doctor to run more tests. I have so many symptoms and I'm frightened.
I'm already disabled but something else is going on.
I am sorry you are experiencing additional symptoms. Keep advocating for yourself and asking your doctors for answers. I know it can be frustrating and frightening.
i feel like i walking on sponges, pain in between sho ulder blades, feelings like cold water running down my face, chest bothers me. i still waiting on mri. i been having symtoms since April, neorologist is slow
Hi Teresa. Sorry you have had to wait so long to get answers. I hope you find answers soon.
You're AMAZING!! 🥰😘
Thank you!!
@@EvenSoItIsWell 🤭😘
I get pain in my legs like it’s swelling but no swelling especially in the summer. It’s fustrating
Yes! I can so relate! My left leg often feels tight, like there is swelling. My neurologist said it could be spasticity making the skin feel tight.
I have not been diagnosed yet. But I’ve been dealing with a plethora of symptoms you mentioned for years. I’ve seen so many different specialist but in June I finally got an appointment with a Rheumatologist. I’ve been thinking I may have MS. Thank you for your video, I feel like I’m going crazy and because no one can see what I’m experiencing, aside from the cog fog and trouble speaking at times, and the specialist saying I’m fine…it’s just hard to be taken seriously and believed.
Isn’t odd when we look back at all the odd little and not so little symptoms? Good luck with the rheumatologist!
I have recently had the term MS used by my neurologist. She also mentioned "White Matter" that was evident in a recent MRI. She has recommended a lumbar punch as a confirmation of MS. I do have some symptoms but would like your opinion on my next steps.
Thanks for watching Deanna! I can’t offer medical advice but I will encourage you to keep advocating for yourself and seeking answers. It may take some time as autoimmune diseases can be tricky to diagnose. I also encourage you to take exquisite care of yourself. There are so many things we can do support our bodies to be as healthy as possible. I follow a four pillar approach in addition to my medication. I eat a whole food plant based diet, exercise regularly, get good sleep, and practice mindfulness/kindness.
Keep me posted on how it goes.
I’m in Jacksonville Florida I am declining and I CAN’T GET ANY DR TO HELP ME
Hi Crystal, I am sorry you are not getting help. Please try to keep advocating for yourself by asking for second opinions and/or referrals until you find answers and help.
How about numbness in the palm
s of hands..and front of legs...feet etc.
Thanks for watching. Yes! Those are some of the common symptoms too.
I have high anxiety and depression, my balance has effected me sometimes swallowing problems and high muscle twitching and had days of being off I looked oops and mispronounced words.
I am sorry all of that is happening. Do you have a diagnosis yet?
I don't know if I have ms or not. I saw you on utube discussing MS Hug. I started reading your comments. For almost two years I wake up with 5my ribs feeling they are in a crushing squeeze. Sometimes hard to breathe. I said i need a new mattress. They are expensive so i havent done it. . After about 10 minutes of walking around , 80% goes away but lately, my bra feels too tight all the time. I have a reason for that possibly. . I have carpal tunnel syndrome that's now in my arm. Numbness. I can't hardly hold a pen to write. So many other symptoms but I can explain each one away, , but put them all together, it worries me. With that info on the ms hug, that did it. I'm going to see a neurologist. I'm 79, so it's probably not likely, but reading you can have mild symptoms for years, then it raises its ugly head; I'm so glad I saw your video.
Thanks for watching. Definitely write down all the symptoms and bring them to your doctor. It is definitely worth getting checked out. Let me know how it goes!
Does anyone have white spots under their skin on their feet? Mine come and go. When I exercise I feel ill after, sometimes flu like aching all over or fatigued.
Thanks for watching. I haven’t had the white spots but have had post exercise fatigue. I found sipping really cold ice water when exercising and wearing a cooling vest help. This is the one I use ruclips.net/video/2Tk1DhuVVsg/видео.html
Could having a harder time gripping things be a subtle symptom?
Yes it can. If the signals have a hard time getting to our hands it can be hard to hold on to things,
How can a doctor diagnose me I know I've had similar symptoms but I don't know how they can determine this the sickness hides or come and go
Thanks for watching. Sometimes it can be difficult to diagnose autoimmune conditions/diseases. Keep a log of your symptoms and bring it with you when you visit the doctor. This will help them to determine why tests to run. Good luck and keep me posted.
This is a good video. I have never been diagnosed with MS but I have dealt with symptoms for about 15 years. I did go and get a blood test and went to the eye doctor early on and they didn't find anything there. I wasn't even thinking MS at that time though. The last time I went to a doctor was about a year ago and he wanted to refer me to another doctor to get an MRI. He said he saw white blood cells in my eyes and thought I might have a more serious situation and he did not name it. I have had a gait problem years ago and it never came back. One arm felt tired and was shaky as hell for a time but it never came back. My eyes though have been coming and going the whole 15 years. One pupil is bigger than another at times. I get double vision frequently and sometimes double vision with just one eye and the other closed. Should I remain happily ignorant or at least hold onto the possibility I don't really have it or is it better to know?
Thanks for watching. It is definitely better to know! There are over 20 disease modifying therapies for MS now to slow down profession and treat symptoms. And if it is something else there is probably treatment you can get on. You can also start to make diet and lifestyle changes to support your health. I encourage you to keep seeking answers and asking for second opinions. Being an advocate for yourself and your health can be tiring and it can take time to reach a diagnosis, but it is much better to know so you can take steps to prevent progression.
@@EvenSoItIsWell Thank you for the reply. I didn't think there was anything that could be done.
@@Strutingeagle there is so much that can be done!! I am 15+ years into my MS journey and still doing well! In addition to my medication, I follow a whole food plant based diet, exercise regularly, get good sleep, and practice mindfulness/kindness. All of these are key to my health and wellbeing. 😊
@@EvenSoItIsWell I am glad you are doing well with it. I know of two people that eventually succumbed to it. I learned that it is not a fatal disease but oddly they did not make it. It must depend on how hard it hits different folks or if they get fluid in their lungs. This just reminded me, I choke on my spit all the time at night too. They had an active and healthy lifestyle. One was able to walk but the other was wheelchair bound eventually. This is a big downer but it happens. You are a very kind person indeed and thank you for your advice. Keep on keeping on.
@@Strutingeagle people with MS are more prone to co-morbid conditions so that may have contributed to their passing. Please accept my condolences.
I have many ms symptoms but here's two I wonder about...
Excruciating cramp like pain in limbs (varies, could be both legs, one arm, etc)... its so bad I'll lay in bed stretching writhing tossing and crying until it passes. I believe this is one of the first symptoms I experienced many years ago.
Strange tightening in my abdominal /pelvic area. Both tingly and tight.
Swelling of legs and feet. Especially in heat. To the point none of my shoes fit.
Besides these.. I was diagnosed with carpal tunnel in both wrists at 25... then went to dr for electric shock type pain down my neck into my shoulder. I had a newborn at the time and the pain was so sudden and intense I was afraid I'd drop him. Dr sent me for xray to check for arthritis which was negative so he gave pain meds. Maybe a year later went to ER with drop foot. On call neuro wanted to operate on my spine then and there but I said no and got a referral for second opinion three months out. It went away on its own so I canceled.
I've been diagnosed also with interstitial cystitis due to constant urge to urinate but can't. But also sometimes will pee myself while coughing or laughing.
Currently my right outer thigh is numb but also at times prickly hot and painful to touch. I get horrible migraines that start and eminate from the back of my neck /base of skull.. I know I'm leaving stuff out but after having many drs dismiss me or throw pain meds at me I've given up. Feel sure it's ms but now I'm just waiting til it's bad enough to diagnose
I am sorry you are experiencing so many symptoms. I can’t say if they are MS or not but as It can affect any part of the central nervous system, there can be many symptoms.
The swelling of your feet doesn’t sound like a typical symptom.
I encourage you to not wait but to bring this list to your doctor and continue to seek answers. Auto immune diseases can be very difficult to diagnose and can take time. Keep advocating for yourself. Ask for second opinions and referrals. Keep me posted.
@EvenSoItIsWell thanks for your response. Having done research, ive read that swelling can be a result of MS (erythromyalgia I think, forgive my spelling... or hot feet)... but then I don't see many people with ms naming this symptom. I also totally understand that no one but a doctor can give a diagnosis, it's just hard to find one who listens and will just do whatever is needed to diagnose or rule out. I was once even told by a doctor that I'm "too young to be in pain"... I know its important to advocate for yourself but as exhausted as I am still trying to work a full time job it seems insurmountable. Anyway, I'm 40 now so hopefully I'll get there. Your channel is great and I hope you're feeling well :)
@@BJM1134 ugh, I am sorry you have been told you are too young and feel like that doctors aren’t listening.
I have AS but I'm getting so much nerve pain in my face and ulcers roof of mouth. I'm so exhausted
Yikes! That sounds so uncomfortable. Anything they can give you for that kind of nerve pain? Does meditation and relaxation help?
My wife had these the last 18 months or so. It became more noticeable. I'm sad because it has caused a lot of anger.
@@BasicBeachCommunity1 I am sorry this is happening. Encourage her to seek a neurologists opinion.
I think I have MS...I have all the symptoms...I'm scared to get diagnosed... I don't want to know... I already have Crohn's disease... How much more can I take?
@@mindyg1960 oh Mandy. I can completely relate. I didn’t want to know or be diagnosed either. It is a frightening thing. It might not be MS. It might be something else that can be taken care of. If it is MS getting treatment and starting to make diet and lifestyle changes earlier is the best way to stave off disability and progression. I am 18 years into my journey with MS and still doing well! I encourage you to go to the doctor and seek answers.
getting tired/zoning out during conversations
That's me. I lose track of a conversation. 😮
Diagnosed exactly a year ago today, Previously in 2014 diagnosed with CIS.I had an episode of facial numbness and walking like I was drunk especially when walking over black and white floor tiles. Had settled down then my neurologist retired plus COVID changed the world and I was forgotten about. Fast forward to 2022 assaulted at work knocked out ,then over the next 16 months it was one thing after another subtle yes... Then one day climbing the stairs the pain I experienced was like getting shot in the hamstring area. I couldn't walk further than a couple of meters. Eventually I had a new neurologist and after he examined me he said in my opinion you've MS wow. Full head and spine MRI the next day. Results a fortnight later. Haven't worked since going through the process of I'll health retirement. Honestly everything you said in the video every single subtle symptom I had but put it down to work stress getting old or just tired. Male 55
Thanks for watching. How are you doing a year in? The first year or two can be times of adjustment where we feel ALL the emotions and that is completely normal.
What tests does your doctor order to confirm MS or rule it out?
Thanks for watching.There are multiple steps to diagnosing MS including ruling out other possible causes of the symptoms (lots of bloodwork), MRIs, having multiple relapses, possibly a spinal tap (lumbar puncture), and taking a full medical history and neurological examination. It can often take some time to diagnose.
Currently the McDonald criteria is being used in most hospitals mstrust.org.uk/a-z/mcdonald-criteria
I have numbness on one leg and have 2 other autoimmune disease, my doctor is now suspecting I have MS, I am scheduled for an MRI on 4 days ! I am scared ! wish me good luck 😔
Oh best of luck! Please keep me posted on how it goes!