Rare and Unusual MS Symptoms (I've seen in clinic)
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- Опубликовано: 5 июн 2024
- In this video I share the most rare and uncommon Multiple Sclerosis symptoms I've seen* in over a decade and a half of clinical practice. Want to hear about the 8 most unusual MS symptoms I've seen, then start watching this video RIGHT NOW!
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Thanks for learning about MS with me, Aaron Boster MD! I'm the founder of the Boster Center for Multiple Sclerosis. We are currently accepting new consultations and actively enrolling several clinical trials. www.BosterMS.com or call 614-304-3444 to schedule!
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These videos do not provide medical advice and are for informational/educational purposes only. The videos are not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read or seen in any of our videos.
*I've changed demographic and clinical characteristics to ensure privacy.
I've experienced the laughing and crying uncontrollably. The laughing 1x for about an hour. The crying would last for a 1 1/2 days for about 2x a year for several years. All before diagnosis. After diagnosis and on various treatments I do not have this issue. I never mentioned this symptom to Doctor but learned it is a ms symptoms
#MSWarrior
Jennifer Miller ‘
I have this and when I’ve had it in front of doctors they acted like I was crazy. 🤦🏻♀️
I have 9 years with MS and I will like to be an artist but the pain in my body make limitations on performance and to continue music career, the medical marijuana has been very imp causing a positive impact like a creator and to reduce a lot of inflammation but the pain is a nightmare in my life, ruclips.net/video/wAiWDK0o4Yo/видео.html
Psuedobulbar effect
I've lost my sense of humor because I'm too wrapped up inside my own head trying to understand what's happening to me 😢 I'm homesick for myself.
Kari Short Keep holding on! You expressed what I have been feeling so well. Profoundly accurate!!! I feel so deeply connected to this sense of not being able to get out of my own head. I would like to offer you a bit of hope. I lost my humour for months but it did come back and I hope you experience the same"recovery!"
I’m sad that there are other people out there that feel this way also.
Dear don’t let MS take your life from you try to ignore and watch humorous movies 👍🏻
Describes what I feel but I couldn’t put into words myself 😪
This how i been feeling past couple of months
Hearing sounds that no one else does. Especially at night when it’s quiet.
I have had MS for 24 years and I am still learning. I hear sounds all the time and often times music. My doctor doesn’t know what it is
@@FurBabyMommaFureva I hear maracas…lol-but not lol… gotta keep the humor ☺️
@@sherrymoreno4605 Neuroplasticity can help, focus on external sounds not the somatic ones - and persevere with that sense of humour!! 😃
@@FurBabyMommaFureva I hear music boxes
@@cookiemacc5011Woah! 👻
i wish this doctor was here in my town
Thanks g c
Me too as I think I might have ms and my doctor said he doesn’t think so
Same here!!!!
Me to sucks
Yes I would love him to be my doctor ❤
My legs, when I'm resting in bed if feels like they're "vibrating" sometimes uncontrolable movement.
oh yes, I have the biggest KICKS happen every night! So much more than just normal jimmy legs, its like a 45 degree angle kick!
I had the movements too. As I started taking Magnesium it went away. I don‘t have MS though.
I use Baclofen for my RLS. Awesomeness
My whole body feels like that sometimes
I don’t experience this, but I have read a good amount about weighted blankets that can help with RLS!
When I was first diagnosed, I had so many symptoms that I needed to write them to ask to my neurologist if it was normal. Some of them was surprisingly weird : I smelled cigarette smoke for 2 consecutive weeks (yummy), I also had horrible itching on both legs at the same place. Sadly the neurologist told me with confidence that the half of my symptoms that I described was not MS but probably "in my head". He took me as an hypochondriac and I felt misunderstood and alone. Sadly, he was an MS specialist. Your RUclips videos, FB groups, and research studies made me learn better what MS can really do to my body.
You struck a nerve for me with the hypochondriac remark. For the past 3+ yrs I've been telling my doctor all the symptoms I've been having n experiencing and was brushed off as psychosomatic/hypochondriac until I had a stroke at 49yrs old, which was caused by an inflamed brain lesion along mri finding 7 more. I went from zero support for years and told its probably your hypothyroidism and in your head to Within a month a team of doctors, MRI's, tests etc.. who all of a sudden were like oh these symptoms are obvious 😒
I have the itching too. I understand how many Doctors do not understand the systems we share with them. They act like we are making it up.
Itching on my right foot was my first symptom years before diagnosis. I literally scratched it raw then still scratched the raw flesh.
It was like my foot bones were maddeningly itching and I couldn’t relieve the itch.
I couldn’t sleep with it. It went on for months.
My doctor said it was an “Itch Scratch”rash that I was causing myself by scratching!?
Then after time,he said it was Stress, then depression..............
So frustrating. As a woman I felt not believed, seen as hysterical (I’m really chill)
At the same time, I had 2 separate attacks lasting for 3-4 months of one sided torso and arm numbness - also “stress” and a “trapped nerve” (at 20 years old!?)
I then had a bout of 3 months of wellington boots of pins and needles
Then two weeks of Vertigo where I couldn’t lift my head without vomiting and had to crawl on my hands and knees, eyes closed, to the bathroom as world was spinning.
That was “A Virus” and was followed straight by two weeks of double vision
I was finally diagnosed RRMS after 3.5 years when I lost joint position sense at the arm
Let me guess... You're a female? Doctors never call men hypochondriacs or tell them their issues are in their head.
😢 I'm sorry for you. Hang in there!
It feels like you have bugs on your skin..
Totally
Im itching all the time
Yes. I always feel I have a spider on me. LOL. Makes ya crazy. :)
It is so helpful to hear others speak about the "bugs crawling" sensations!
Has primary biliary cholangitis been ruled out? I also have that as another auto immune. disorder. This was the source of my itching. It's pretty rare to have MS and Primary Biliary Cholangitis. There's about 350 worldwide with these two together.
I sometimes get the sensation that hot liquid is being poured on my leg. It takes me a moment to realize nothing was spilled on me. I also have the sensation that I am having tremors in my arms or legs, but my muscles are completely still. I often feel a low level buzzing in my arms and legs which is annoying when I'm trying to concentrate. I could keep going, lol. I don't think my neuro believes many of my symptoms, which is almost as frustrating as the symptoms themselves!
That sounds super unpleasant Dana. I've heard many other patients describe similar "liquid poured on my ___" before.
I get this in different parts f my body. Sometimes the opposite like Ice being poured on my head
I so get the sensation of the hot water on your leg. I have a similar thing. Mine feels like I have bag of ice laying on my leg. Then it starts to tingle and then gets fire hot and painful. The area of my front thigh where this has been happening for months has become completely numb.
TY for sharing with us Tammy! #WeHaveMS
I've had this happen before too...it felt like either hot or cold liquid for me. I also often experience the feeling like I have bugs crawling on me. I'm assuming this is a similar type of reaction with the nerves.
I have many cognitive issues. I forget short term memory, I forget my words, while talking, they come out wrong or backwards. Things is, people around me, are getting sick of this from me, and just get annoyed. Having a very small amount of people, who do care,read up on it. It hurts when people are fun of me. XoXo’s
@Kris L same here, I am concerned that I may have early onset dementia. But I literally just try to joke it off to my fam, but deep inside I'm scared to death!
I have forgotten what I was saying mid-lecture on content I've taught for 20 years.
This is how I feel too because sometimes when I'm talkin to people certain things don't come out the way it's supposed to be but sometimes I feel like I can't think straight. And luckily my family and friends understand what I be trying to say when I talk to them and sometimes I stutter and I do forget what I want to say half of the time
Andrea Wheatley you should dump your friends they have no love or patience for you, narrow them down, I carry a think book, I’ve called it that, it’s just a pretty book to write thoughts list n words too! 😀 hope this works for you x
I am suffering from the same symptoms. My teenage sons have no patience with me to the point that they would rather not talk with me. They are getting slowly better at being patient with with me. Also, even though I have lived in the US for over 25 years, English is still my second language. I loose words mid sentence and can’t remember how to say it neither in English, nor my mother tongue. Very frustrating.
Ah yes, the ITCHING!!! It’s so random and so incredibly frustrating! Benadryl sometimes helps, but I sometimes wonder how much of the relief is psychological, since there doesn’t really seems to be a good reason to be itching to start with.
Thank you for sharing Megan. Pathologic itching in MS is often from a lesion interfering with sensory processing. I see this most often with spinal cord lesions.
Aaron Boster MD
I was undiagnosed/misdiagnosed for about 20+ years. When my neuro looked at the first head and spinal MRI that I’d ever had (at age 40), he said something to the effect that it “lit up like a Christmas tree”. There are far too many spinal lesions of varying ages to count. It wasn’t until I started having trouble with walking and balance that I became very concerned and was finally able to get to the bottom of it. It makes sense that the itching is caused by a lesion, but I find it strange that it comes and goes so randomly. Most of my other symptoms (particularly pain and neuropathy in all four extremities) are with me on a constant basis. It seems to be worse in the evening or after a shower. If the itching is primarily in my arms, am I correct in assuming they are probably cervical lesions that cause this particular symptom?
Yes that's the most likely localization!
I have bumps and wide spread itching and pain..... I sometimes even walk as if I'm drunk (I don't drink) I get 'cog fog' as well.... I'll be talking with someone and all of a sudden it sounds like they're speaking a different language.... frustrating
I itch and scratch till I bleed and bruise. It's awful. There's no rash or bite, but I cannot stop scratching. Heat seems to exacerbate it, but it occurs whenever it wants. I'm in the diagnostic phase so I don't even know if it is MS, but it sure does act like it. Thank you, Doc. Every little bit of info helps.
I haven't been diagnosed with MS, but my doc wants to run tests for it.
A weird symptom I've been experiencing for years is when my body heats up when I'm doing anything active, like cleaning, going for a walk, etc. My muscles and skin feel really hot and start going numb, sometimes I get a vibrating sensation in my hands, then it becomes harder to move around. As soon as I sit down and my body cools off it gets better. I've been experiencing numbness for years it seems to come and go, but it gets way worse when I'm doing anything active. So weird, even my tongue and throat will go numb sometimes, the numbness seems to be worse on my left side. This is all accompanied by extreme fatigue, trouble keeping my balance and even walking at times, blurred vision, brain fog/ forgetfulness. I'm also constantly dropping things. Very scary and frustrating, I'm hoping I can get some answers soon.
Thanks so much for this video!
Update?
Update? If not ms ask your doctor about functional neurological disorder
I have that all the time with heat and I have had MS for 24 years
Sounds much like me, I was diagnosed a month ago. My neurologist says I've had it 2 decades or more. It's a very strange disease that has made my life terrible for so long and I had no idea. It wears your soul away to see your life crumble to nothing, powerless to make positive changes. Heres to a better tomorrow, I hope you have found a treatment that helps.
Update? I have NOT been diagnosed with MS, but I have similar symptoms.
Thank you Dr. Boster. Many of the unusual symptoms you described is what I experienced before my diagnosis in 2010. I was actually diagnosed in the psychiatric ward of a hospital, after a 2 week stay. I had psychosis, erratic behavior, laughing spells, cog fog, depression, and I'm having the itching going on now for past 2-3 years. In the psych ward, a neurologist/psychiatrist asked me to explain my symptoms once again and she ordered an MRI and spinal tap and diagnosed me with MS. It was a long, hard scary journey because for almost 2 years every hospital was saying I was having a mental breakdown. What you are sharing is true. Thanx! 😁👍
I’ve been itching for 16 months. I need it to stop.
A tickle is a stimulated pain sensor. When our nerves are damaged and still trying to fire, it sometimes comes across as cold, burning, pain or itching. I have lived for years with the idiopathic (unknown origin) itch for many years. Make sure you are using everything hypoallergenic. I used Benadryl until I had to take Norco for pain. I use a soothing lotion, like gold bond excema. I also do dry brushing which is great for circulation. I hope this helps someone. There were no drugs or help when I was diagnosed.
Swelling: Hands, feet, face, stomach.
Yes, what exactly causes this fluid retention? It's horrible.
Is this MS? I get this too even off of the steroids.
Me too!😔 I forgot to mention this in my comment above.
I hate this x
I have been getting swelling on my face, sholdes and back and one time my tongue.. it comes on suddenly and goes away just as suddenly I'm trying to figure out what's going on and my research has brought me here.. I also get numb when laying down and been having pain and foot problems that making it hard to walk..
Light sensitivity is increased and I also startle real easy.
Me too. When I had my first episode someone just talking from behind me would make me jump out of my skin. The sound of something being dropped on the floor would make me scream out loud. Usual every day occurrences caused me to suddenly feel absolutely terrified!
Me too, I haven't been diagnosed yet though.
I use to startle soooo easy too!
Gerdog stenc I also have that but the two come and go and always come together
Same here
Reading used to be difficult for me. I would read a sentence that said:
“The cow jumped over the moon”
I would read it like this:
“The jumped over cow the moon”
And I don’t have dyslexia or anything. I would have to re-read a sentence to understand what it said. Luckily this symptom stopped. But it was very frustrating
Did it go away with therapy?
I just want this gone so bad, it ruined me.
You are awesome! Thank you for breaking this down for us all! 🧡🧡🧡🩰
Dr. Boster... Thank u. These videos mean the world to me.
Startling very easily. Stuttering.
Have not heard these addressed. ANYTHING will make me jump and hard. It's painful! Thanks again Doc! Lo in Fl
WY Flo, thanks for watching! And thank you for sharing Lo, that sounds tough.
Lo Merritt this happens to me too, but not all the time.
Lo Merritt I have this too. It feels like the flight or fight reflex, but over exaggerated, and comes on suddenly when it’s not required. Literally I will scream if someone walks past me from behind in the street or I turn a corner and someone is the other side. I have frightened many a poor soul by screaming at them. So jumpy it’s ridiculous 🤯.
ugg!
Darla, NJ, thanks. Yall are the first to validate that. Yes, someone around corner or pass me in store...GAAAA! People will apologize for scaring me. I tell them it's me not them. Funny as I like scary movies, etc. This is different and not a fun sensation. #WEREALLDIFFERENT
So glad you have highlighted these issues because there is not a lot of information out there for us. It is so frightening when odd symptoms appear that aren’t discussed often enough, or even recognised as MS symptoms. Thank you so much. 🙏🏻
you are very welcome new jersey!
Hi Dr. Boster, I’m so happy to have found you on RUclips the other day. I’ve been watching your videos nonstop. I’ve had 2 unusual symptoms that no one has had that I’ve asked. first symptoms that lead to my diagnosis were very painful muscle spasms starting at the top of my head traveling down to my feet only on my left side. When I started to get dizzy and my head would start tightening up, I would brace myself. my chest and stomach would start tightening up. My left arm, hand and fingers would start to curl up so hard that my Big Guy couldn’t get them open. My foot and toes would curl up in my shoes. It would hurt so badly lasting about 15-20 seconds, then it would let up and I would be fine again. My other weird symptom would start again with dizziness in my head, my voice would start to really slur, my arms would swing violently if I tried to raise them and my body would start rocking back and forth. It didn’t hurt and often occurred when I was woke up, got too hot or tensed up too hard. It lasted about 15-20 seconds too. I don’t have any of these symptoms anymore..I did all the tests for seizures and they came back normal and clear. My first lesion was .3 mm on the right of my cervical spine. The 2nd was a 3.7 mm on the left side of my cervical spine. Have you ever heard of these symptoms? If so, what could they have been?
I just found your channel and im so please. I have been diagnosed for 4 years now, 16 when diagnosed and these videos are very helpful and informative
Every symptom I have had with ms has never been the same diagnosed 2002. From burning, tingling, neuritis, speech, tips of my fingers and toes sleep, body right side, cough, summer, left leg, lower back pain etc.
Leslie Ann im dealing with this now I havnt been seen yet all of them
Thank you for making these videos, Dr. Boster. My
first husband hid his MS from me...I found out from his mother after we had already spilt. He has to live with her now permanently and he’s lost of most of his function. He has some of these rare symptoms...didn’t realize they were rare. I’m still trying to make sense of it. From what I’m learning here, his symptoms might not be so severe if he JD gotten treatment earlier. He was distrustful of doctors, which ive commented about on one of your other videos. I wish he had had someone like yourself who took time to explain things.
You have no idea how much I love ur videos. Thank you.
Thank you for clearing up so much of what iv have been going through
Thank you for doing this video! I was diagnosed in March of 2018 after almost 20 years of troubling symptoms that were dismissed as mental health issues or injuries from a later car accident. At 13, I was diagnosed with psychosis after several episodes of not being able to distinguish between reality or not. These episodes led to me being hospitalized 3 times within a year and a half. The following year at 14, I had an incredible and sudden onset of physical symptoms that were brushed of as severe panic attacks. I would describe it to others that I felt like I would have a heart attack, stroke and seizure all at once. These episodes would last hours and happen daily and I was put on several different medications that did nothing to help.
I'm not going to explain close to 20 years of symptoms here, but let's just say that I have a lot of the unusual symptoms as opposed to profound physical disability. That's not saying that I don't have physical symptoms, but the ones that I do have are weird and not really explained thoroughly to me. I have no seen spinal lesions, but a large amount of lesions on the brain. I have exacerbations where full body pathological itching is one of my main symptoms and it is horrible. These itching episodes will go on for days to weeks and make it almost impossible to sleep. I get bouts of extreme, sudden cog fog. Very easy startling. I haven't had an episode of psychosis in a few years now, but they were still happening.
I wish I could see Dr. Boster , too! I loved this discussion today🧐I have the itching but only intermittent-yet has been going on for years. Am so glad to finally understand why! Sometimes I have the crying- usually around a spiritual topic . Older , former nurse and am past the age of receiving the treatment they offer the younger clients. Praising the day I found you! I’ve learned so much and have found relief in the experience of “ learning together “Priceless and Comforting the Compassion you share ❣️
Thank you for such great information!
YW Kay! TY for watching!
Thank you, I haven't been diagnosed with MS but this has helped me in compiling a list of symptoms for my medical appointment, symptoms I wouldn't have thought were connected with MS
You have no idea how grateful I am that you made this channel! Thanks so much Doc!! Have a beautiful day!
My pleasure!
Thank you for the channel. My sister was recently diagnosed with MS and I want to learn all I can about the disease in order to support her as best I can. Subscribed!
TY for subscribing Slynn. Ring the notifications bell and it will alert you with each of my new videos! I try to publish a new vid once weekly (but oftentimes get excited and publish 2 or more! opps!)
I just want to say thank you. I have been trying to explain what is going on with me to family and Drs. with this presentation i can explain my problems with MS so much better.
Thank You for sharing Dr. Boster!!! I hope NOT to have some of the rare conditions that you described but it is Very Helpful knowing this information! And sharing it with my wife!!! You are AWESOME Sir!!!
Dr. Boster, love your analogy of our spinal cord, the SUPER HIGHWAY. Please continue to share your knowledge and observations. It's nice to hear a medical professional provide the insight we don't get to ask during our visits to the neurologist. Many thanks. Cindy
Thank you so much for all your videos. I haven't actually been diagnosed with MS - but I am very frustrated because i am having trouble getting in to see a specialist/neurologist here in Australia. My symptoms include tingling down the side of my face, dizziness, difficulty walking, squeezing sensation in chest and head, internal vibrations, muscle fatigue in limbs, burning pain in limbs...just to name a few. I had a brain MRI that had 15 "non specific" lesions and 10 months prior to that I had an MRI with zero lesions. But because they were non specific they said wait a year....haven't had my spine checked at all. Anyway, I'm very frustrated because I'm going down hill and I can't even get anyone to look at me. Sorry, I just needed to vent. Thanks
YOU ARE THE REAL DEAL YOU REALLY UNDERSTAND MS PEOPLE MY HEART GOES OUT TO YOU HELL YOUR A DOCTOR WHEN I FIRST GOT MS I COULD NOT STOP LAUGHING DIDNT NO WHAT THE HELL WAS WRONG WITH ME CAUSE ITS NOT FUNNY
Thank you so much for your videos. I share them more than any other channel and that includes cute cat videos! 💓
I'm so glad I found this video. I have progressive MS and in June of this year I had psychosis and they put me in a mental hospital for nine days and diagnosed me with a mental illness. I'm 41 years old and had not previously experienced psychosis, just depression and anxiety. Now I know I need to inform my neurologist about the psychosis and hope he knows it can be a symptom of MS. At the hospital, they put me on a medication that's used for schizophrenia, which I'm still taking. I'm certain it's the MS that is causing the depression, anxiety, and other mental quirks. I see my neurologist in 10 days. Thanks for this video. I love all of your videos.
Yes, the vomiting and the itching. No one could figure it out but now it makes sense that I’ve had two flairs this year. I honestly felt that was going on and am relieved to hear you teach on this.
I itch all the time😳. Makes me have severe anxiety 😢😢
So informative-you rock!
TY!
Thank you for your easily understood detailed information. I am still active after 40 years.
Thank GOD for u
Agree 100%
uh.. that's insulting. you should say "thank YOU for you".
@@mcdeigo I love it!
I'm a nurse and get tired of people who suffer give an imaginary deity credit when its doctors and nurses that help people. More so, the pharmaceutical companies that create the real help. If we left everything up to faith, there would be an epidemic of death because prayers don't work. That's doing nothing without doing anything at all. We don't see faith hospitals curing people. Scientists and researchers are our heroes. Preacher's are succubus con men.
@@angelahall4402hilarious. Have you read all the comments about being gaslighted by the medical field about their symptoms?
I have had the unknown itching that lasted for months. I haven’t had it in quite a while thank god. you have given me validity on a few symptoms I was told had nothing to do with MS like the itching and cog fog. Again I love your videos. You should come to NYC and do a Q and A.
Kapluchi, thanks for watching and thanks for sharing. I have an idea- you and I could do a Q and A live on RUclips! You get a list of questions, we both get on RUclips live (somehow) and you ask them and I answer them real time. What do you think?
Wow. Thank you for the information. I have a lot of questions for several doctors.
always great info
Oh my goodness! I am so happy I saw this today. I have been going through a period of severe itching that has no know source (that I could think of) so I was concerned it may have been my MS. I have been scratching until I bleed simply because I cannot stop. I also get bad cog fog. Sometimes, I cannot even seem to remember my children’s names. My neurologist was unconcerned with the cog fog and said it was par for the course. Thank you for your videos. They have helped me become far more familiar with my illness. I went I diagnosed for a long time.
Howdy Squatch Box! Thank you for watching my videos and thank you for the kind words! #WeHaveMS
I experience several of the rare / unusual MS symptoms you discussed. It is so frustrating. I am seeing a new Neurologist in Feb...praying he is as attentive to details as you are. Praying for help with my MS
Best of luck Nicole, you got this!
Aaron thank you so much for this video
YW Rebecca #WeHaveMS
Thanks for sharing Doc, interesting stuff ...
YW Funkyflights
Really enjoyed this one!!!! I have the zings in the head,smells trigger nausea and vertigo,I have Menniere's. Currently watching the history of the Mayo Clinic on PBS and I saw your upload and now I'm binge watching what I've missed!!
Thanks AJ's HR! Thank you for sharing your experience and for supporting the channel! #WeHaveMS
Your videos are amazing!
Glad you like them!
The intricate revelations of neurological challenges is astounding. Thank you Doctor. Be 🙏 Well
I cried watching this video and the pathologic itching video as well. I feel like you were describing me specifically the whole time, yes all the symptoms, not just one or two. I have been to over 100+ appointments this year since January 1st and I'm really starting to believe that I am the crazy one 😔 but my local neurologist checked for MS to rule it out and so far they say my brain and cervical MRIs are normal. As I'm writing this the electrical impulses in my head and down my neck and arms are so bad I can hardly stand it. I'm so sorry if this is TMI for a comment but I don't know what else to do. Thank you so much for the time and effort you spend on your videos as they are very educational and I do understand they are not in place of a medical diagnosis.
Cinnamon challenge mike
The cog fog! Along with stroke like symptoms sent me to the hospital last year in July.
I needed to hear this 😩😔🥺❤️
Great speech Sir
Worst symptom for me at the moment is feeling like the physical embodiment of white noise while trying to sleep... feel like I’ve been plugged in to a power socket! - so frustrating and doesn’t help with general fatigue. Really interesting video, thank you 😊
Hi, I suffered with the same thing,try tapping the back of your head with the tips of your fingers it worked for me 😊
I've experienced some of the unusual symptoms mentioned in your video. I'm concerned that I have MS but have not been tested. I was diagnosed with Hashimoto's during the pandemic. I kept telling my doctor that something was off but he never considered an autoimmune condition since my labs were normal. I finally figured it out and went to a different clinic to get tested for antibodies and was properly diagnosed. My story is too lengthy to post but I'm struggling in life like never before. It's my belief that most people don't understand autoimmune disease as a result I've suffered greatly. I'm not a typical complainer, I just honestly have never felt worse. I need to have a MRI, I just don't want another doctor who doesn't understand. If you have any suggestions for a doctor or clinic in the Nashville, TN area please let me know. Thank you so much, Jamie S.
Hi Jamie. Sad to read your story. It took me THREE Neurologists and nearly two years to finally be diagnosed with MS. Even misdiagnosed me with Lymes, another said it was Lupus! Yet another said I was shopping for a diagnosis(after seeing my past record of other Neuros), and was needing a psychiatrist because he said I was a hypochondriac!! I suffered for years, but kept looking for an explanation. KEEP LOOKING for a neurologist that will do the proper testing-MRI, spinal tap, EEG....my thoughts are with you.
You are setting the bar really high. Im so impressed you are offering your expertise so freely. I like to learn about all thinks health related. I'm just a lowly telemetry tech who enjoys learning.
you're NOT "just a lowly telemetry tech." What you do is super important and I appreciate it. Please don't belittle what you do!
So I watched this and was all sad and whatnot, worrying about getting these things some day, but then the chickens show up and I felt better watching them. Thanks for that. :)
Yesss, I have .omg . The itching, vomiting, brain fog dementia, etc
Thank you so much for posting this video!! I have weird hearing loss in only my left ear and no one was able to figure out why. I also had leg numbness and sometimes severe pain we just figured was a back injury, so grateful to finally find a dr that looked further because I guess hearing loss isnt common. She said last she had never seen an MS patient with it.
Hearing loss is indeed a rare MS symptom. Super frustrating! #WeHaveMS
I have hearing loss in my left ear from antibiotics, Cipro and Bactrim but any of them can do it. I know that's what caused it because I've taken antibiotics a lot and each time my hearing in my left ear got worse.
Thank you so much for your videos ❤️ I was diagnosed about 20 years ago. Some years ago I suffered from an insane itching, both my legs. I was scratching myself until I fell asleep, totally exhausted. Almost every night a couple of years, from a few minutes to an hour or more. I was told it was urticaria/hives... Well now I know :) My condition is much worse now, the walking part. But thank God, the itching has at least not returned. A warm hug from Norway ❤️
I'm glad I've found your channel, I love your empathy, approach and for being for great details. I wish you were my doctor.
I apologize ahead for my lengthy comment. I thank you for taking the time to read, just sharing for purpose someone may have similar story or for something to ponder on for future reference.
***"I haven't been diagnosed with anything yet, but leaning towards thinking it's a possible MS.
Before this onset I was full of life and stamina:
I've been suffering: 3 year's my onset of 24/7 floating and swaying feeling in my head every day for 3 year's, head heavy, brain fog, small headaches off and on and I've never been one to have headaches, "brain zaps" sometimes, internal vibrations in my head, internal vibrations in my head monetarily during the day time, have them in my head and back when falling asleep at night, some cognitive issues, my writing use to be great, not anymore, chronic tingling in feet-mostly my right foot, sometimes feet cramp, spasms in my right leg sometimes, crying every single day, developed chronic Tinnitus this past August 2020, twitching in right eye, chronic severe fatigue to where I can't function barely, insomnia, debilitating anxiety and depression, anxiety can get so bad it feels like paranoia, with terrible panic attacks, with moments of depersonalization, "here's a really strange symptom, when sitting down, feel like my buttocks is moving when it's actually not", I have neck tension from trying to compensate from the 24/7 floating and swaying.
I could never handle heat, makes me exhausted, even a hot shower.
I recall my late mother telling me I use to sweat a lot as a baby in the crib, my face would be red. She had to take hormones almost the full 9 months to carry me, to prevent miscarriage, she stated a couple time's she thought from having take them, that it may had contributed to that and my issues later with my thyroid and reproductive issues, just a thought she had. I found out years later after researching, there's women called DES Daughter's, they have reproductive issues from their mothers that had to take hormone from miscarriage in the 1960's , there seems so much more to learn about our bodies.
In 1993 I had a partial thyrectomy, was placed on thyroid medication but overall don't believe it's contributed to that as I'm looking at the time frame the symptoms began. I did however have intermediate constant floating around 1996 and 2015 for a couple months but it disappeared.
I had been to various doctor's and specialists, multiple vestibular tests were performed which nothing was found, however "2" small white matter lesions were found on my MRI brain scan, but Nuerologist stated symptoms aren't correlated with that or signify "No Demyeliative Plaque" lesions that would speculate MS. One lesion in the "Superior Frontal Lobe" and second one documented on report as "may" be a "vascular variant" located in the "Dorsal Pons", which Neurologist stated it could be from aging, past migraines, or at some point a "TIA", but not sure, however stated symptoms are not correlated to lesions.
I have had CT Scans, full work up from a Cardiologist, all normal. Seen a Audiologist in October for Tinnitus, series of tests conducted, only findings was my high pitch was slightly affected and that comes with aging, and being 54 years of age that's expected.
I had a full hysterectomy in 1993 at age of 27, prior to that had 5 surgeries due to reproductive issues. Hysterectomy was my last resort after having multiple surgeries. Prior to having the surgeries I did experience some menopausal symptoms. Following the hysterectomy I was placed on HRT and did fairly well for year's, than in 2017 I had to stop taking it as I lost my health insurance, couldn't afford out of pocket, was than placed on Estradiol for a few months, about a month later after being off Premairn. I began experiencing a floating feeling in my head at every waking hour and it's been there since stopping Premarin. I have chronic severe fatigue, 24/7 floating in head, (tinnitus that began in August of 2020), chronic tingling in feet, anxiety and depression from dealing with the constant floating feeling in my head. I've been to a Neurologist, Cardiologist, Audiologist, I've had extensive ANA- Antibody test which was positive @ a Titer 1:40, but extensive antibody tests were normal, CBC, Hemoglobin, Vitamin B12, Potassium etc...... all normal, except Vitamin D was 26, a bit low and have been supplementing since.
I've made an interesting observation looking at old lab results dating back to 2017, my "White Blood Count" is within normal ranges but they've increased within the normal ranges, example-2017, it was 7.2, 2018, 7.8, 6 month's later 8.5, than a little higher following year, last week they're at 10.31. I know WBC can fluctuate up/down but mine has been slowly increasing within normal, which has me thinking maybe there's an invader of some sort but not enough it's increasing rapidly.
I was diagnosed with Hypothyroidism in 1996, which I needed a partial thyrectomy due to a "benign" tumor and was placed on thyroid medication, overall through everything, I didn't begin getting these symptoms until I stopped taking Premarin. It seems more doctors don't want to prescribe it cause or the risks, so I don't know. I truly believe my symptoms are from not having no estrogen, maybe MS or "both", I've thought stopping could had triggered a "possible" autoimmune disease or it was always there and thought symptoms I had through the year's was hormonal related.
***"It is so awful, can barely get out of the bed to even do a follow up with a Neurologist".
I imagine as complex as the brain is and all its nerves and electrical system etc..., it can present so many symptoms. One health condition, lesions, low in a nutrient, vitamin, stress etc...can affect the brain and neurological system.
My sincerest heart goes out to all of you. Thank you Doctor for letting me share and I thoroughly appreciate all you do.
Love the tie!
Thank you Ann! What a nice thing to say!
I was diagnosed with MS a few months ago and this entire experience is rare and unusual for me. This video was extremely informative and necessary. Thank you for the information doctor, its much appreciated!
what were ur symptoms
@@mishaalzk6033 My initial symptoms were balance and coordination problems that were persistently getting worse in a short amount of time, numbness in my arms, legs, feet and toes, brain fog, sharp shooting pains in my cervical spine (neck) whenever I put my head down, I would randomly go numb from the waiste on down. All of these things happened in the beginning.
I don’t have ms but I’m a RN and I am learning a lot about MS ..liked and subscribed
TY!
I experienced the intractable vomiting. It was really scary and painful. In the hospital they could not help me that evening and send me home after an infusion. I ended up sitting on the floor at home with a bucket on my lap - vomiting the whole day and night - until I (somehow) fell a sleep. I am so thankful for not being forced to get through this again. I still suffer from uncontrollable nausea, but prism glasses and sunglasses give me relief from that.
Thank you for your video!! I feel better knowing that this happens because of the lesion in the medulla oblongata.
I've had itching for 8 years. Head to toe, feels like what I imagine body lice would feel like, I can't count the times I've hit myself in the face with my phone, cig, remote, etc., pins and needles, pain, fatigue, etc. It's the itching that brought MS to my attention. I haven't been diagnosed, but I'm starting to wonder if my diagnosis of fibromyalgia is correct?
I was diagnosed a little over 30 years ago. I went through a period of several years where I would occasionally smell cigarette smoke. There were no smokers in the house and I was the only one who could smell it. Lately the lower back of my scalp will itch for a couple days or so. My scalp is healthy and it comes on quickly and goes away quickly--never would have guessed it my be the MS causing it or that the smell of cigarette smoke could be from MS either. Thanks for your videos.
TY for sharing Tari! #WeHaveMS
Thank you so much for discussing “Status Epilepticus.” This exact type of seizure affected me Christmas Eve 2017. Three days before it occured, excruciating pain gripped my quadriceps. By day three, my then-husband, noticed I was holding-the bedside while my right leg continuously stomped the floor. He called 911. What was scary for me, was seeing “snapshots” of events then blacking-out. I literally thought I was in a nightmare. According to my ex, my eyes were open the entire time, but when I tried to speak, nothing intelligiblele was spoken. “The lights were on, but no one was home.” The hospital/ER doctors were clueless about MS. Brute strength must be a trait of this type of seizure, as it took four male nurses to hold my legs for a catheter….I don’t remember. All I know, is I woke-up in ICU 24 hours later wondering what had happened. Later on, I learned it took seven IV doses of Ativan to stop my seizure. It’s the most terrifying MS experience, ever. What the brain decides to do when attacked is bizarre. Thankk you, again. Great, informative video!
Sir I can't thank you enough for all the information you have given freely. I was difficult to diagnose because I have rings around the lesions on my brain. the doctor's assumed I had toxo plasmosis, cancer, or maybe a tape worm. I apologize for the spelling. It took them 14 days to get a proper diagnosis. I just started trying to learn about my condition. I was diagnosed almost exactly 13 years ago. I never had the courage to learn about the possible symptoms. I have suffered many of the symptoms you describe in these amazing videos. Now I can talk to my neurologist about them. Bless you sir. You have helped me to understand so much about my own physical and mental behavior. This is a very confusing thing to deal with. Your videos have given me hope. Something I lost a long time ago. I have no idea how to express my gratitude Doctor Boster. Thank you so very much. Love and respect from Texas.
Hi Aaron! Thanks for the video, it's quite informative and I love watching your channel.
I have the sensation of a sunburn, that occurs in place of the typically-described 'electric shock' from Lhermitte's sign. When I bend my neck down far enough, this sunburn sensation travels down my spine and flashes across one or both thighs. As soon as I straighten my neck, the sensation disappears. It's not painful, yet it is uncomfortable and distracting. It's very similar to the 'hot liquid' sensation described by others, but I can make it occur on command! Hurray?
That sounds super annoying Rick!
i have several of these, the uncontrollable crying and laughing is a nightmare, my doctor just prescribed depression pills, I knew I wasn't depressed so didn't take the pills
I have so many different symptoms with ms . When I go to my neurologist I feel like a hypochondriac explaining everything. I try to tell her the most frequent and the worst of them. Love these videos thank you they are so informative and I have learned so much. I hope one day to visit your clinic with a doctor that is so knowledgeable, patient , and understands this difficult disease. Thank you dr.
I have the MS fog. I was diagnosed with Bipolar disorder before I was diagnosed, I told the doctor about the depression and that I couldn't laugh anymore, they thought I was crazy. I ended up having bouts with double vision and the eye doctor is actually recommended I see a specialist, so he contacted my doctor and then I was sent to a specialist and was diagnosed with MS. I have the heat sensitivity. I have the bouts of itching that never ends until the flare subsides. I also have diabetes and I've noticed that if my sugar gets too high, it can also be a trigger, or I think it does. Before I was diagnosed I thought I was getting Alzeimers, but it didn't affect me too often. I do have steroid therapy for symptoms and as long as I take all of my medication, the symptoms are manageable. Thank you for putting this information out there.
I get a warning sensation on different places on my legs. I also get a sensation of water droplets as well on my legs but no actual water on my legs.
I get the drops ofs water hit my legs but they're really not there
I also get a sensation of water dripping on me. I used to get a burning sensation on my ribs like being touched by a lit match. The latter is gone.
Oh my I have had that water droplets running down my legs. Only to find out there was no water on my legs. Weird. Thought I was hallucinating.
Thank you Doc for taking the time to do this video as well as all the others I watch them all. Will you please make a video that addresses how menopause affects MS and what we can do about it. I believe this is what has affected my mobility in a bad way 😔 If I lived in Ohio I’ll definitely be in your clinic!
Thank you for watching and thank you for the suggestion Terri, it's a good one. I'll certainly add this to my list of topics, thank you! #WeHaveMS
Hi I have my. Vision slightly and I just started getting muscle spasms and often like 4 to times a day my leg will give out I also noice tingling at night that wakes me up.
@@AaronBosterMD This would be great. I have not been diagnosed yet but MRI's are scheduled. If so, there was a huge uptick in symptoms with loss of estrogen.
I wish you were my Dr. I learned so much about my MS thank you ❤
Very interesting thank you so much
YW Beth
Alright, here goes. I have persistent itching mostly on the left side of my spine in the mid back area. I also experience lots of shakiness in my legs. Sometimes I have tingling and numbness in my fingers and toes. I also experience frequent myoclonic seizures ( around 20 to 30 a day. The cognitive fog you mentioned resonated with me. A couple of years ago I was in bed so long I developed 2 bedsores. Headaches. No money, no insurance so I just deal with it the best I can. BTW. No official diagnosis of MS, but 5 out of 5 doctors have said they feel it’s MS. thanks for listening
During the onset of my first attack, I felt that my head and and other parts of my body were vibrating as if they were set to vibrate like a cell phone. At the same time, I started to experience severe problems with my eustachian tubes, leading to a dx of patulous eustachian tubes. The feeling was the sensation that of experiencing the worst part of an airplane ride 24/7, which is only relieved by lying down. I've had approximately 50 surgeries by 4 surgeons in 4 states, with varying amounts of success. The eustachian tube disease has been by far the most unbearable and disabling symptom of my experience with MS.
New subscriber . Very new to MS. Optic Neuritis started it all. Itching, fatigue,balance, Vertigo,etc soon followed. Your channel is helping so very much.Thank you so very very much.
Howdy Jaci! Your comment just made my day!
Dr Boster , I am binging on your channel tonight instead of Netflix.......😀
wow that is really cool!
Thanks for these videos Doc! MS can be so frightening but knowledge gives us confidence, we feel more in control. I have had RM MS and dealt with it successfully for 36 years now. Just lately I got terribly dizzy and had a feeling of "tightness" across my face, as if my skin was being stretched from the inside out, and some numbness and tingling especially on my chin. Spasticity which has been more or less under control started up a day or two before this too, very painful in my feet, ankles, calves, even my ribs and upper legs. It's annoying because thanks to a very careful diet almost all my symptoms improved for a good long while. Why then would it start up now all of a sudden? Can't think of anything that would spark it off?
Thank you for reassuring me about vomitting, my neurologist said that it wasn't MS' fault that I lost 25 kilograms due to unstoppable vomitting. I was lost, so I thank you, from the bottom of my heart !
you are welcome!
I have MS. One day I was suddenly hit with a severe form of OCD. Literally one moment I was fine and the next I wasn’t. I thought I was losing my mind until I got an MRI showing an active MS attack. The symptoms improved greatly with IV steroids., although unfortunately not enough and it’s still a struggle for me. OCD is brutal 😓
I really need a dr like you!
I think I experience numbers 1, 4 and 5. I was diagnosed on December 29th 2020. I'm learning allot from your videos thank you.
I've had MS for 20 years, but in the last 3 years I've developed Neuromuscular Scoliois and it has progressed rapidly and is, by far, the most debilitating symptom I've experienced.. When I first noticed it I was leaning slightly but no pain. Over the next 2 years my angle of scoliosis has progressed from 40 degrees, to 55 the next year, and now it is 68 degrees (at least that's what is was in January.) I cannot stand up straight and that's an understatement...I lean at an almost 90 degree angle when I am on my feet for any length of time.. I spend most of my time in a chair with feet elevated, or in my bed, arranged with a wedge system so I can be upright in the bed I have never been a good candidate for surgery because of the extensive spread of the scoliosis and my inability to rehab from a surgery this complex. I have no core strength after 20 years, the core strength is very weak Far from what is needed to recover from a surgery that takes two days to complete...one 8 hour surgery and a couple days later a 12 hour surgery. During recovery you need to move your body without bending your back, and rehab can be 6 months (the incision is from the cervical spine through L-5.) I still can walk, just not very comfortably. I've had my Baclofen pump upped and it does keep the spasticty in check, but does nothing to help the lean/curve. The thing that surprised me about the scoliosis was the speed at which it worsened. The radiologist had an x-ray that we took just a few years before the beginning of the scoliosis and my lumbar spine was perfectly straight and the vertebrae were spaced perfectly. Now I advise if you notice a lean to one side, get an scoliosis series of x-rays and rule out neuromuscular scoliosis. Scoliosis usually progresses a degree or two per year, but with Neuromuscular Scoliosis the disease can progress much more quickly. Mine has progressed a degree per month and sometimes more that a degree per month. So pay attention to "leans."
Wow... This is me! I've been reading about this since I came across your comment earlier this evening. Thank you for sharing! I would love to have an update if you are willing! 💕
After I had my youngest child, I almost immediately lost all sense of taste and smell. When I mentioned it to my OB/GYN, he said that it sounded like my wiring was screwed up. My MS neuro later confirmed that was caused by MS and it's very common to have a flair up after giving birth.
I also have this weird cough that plagues me in the evening hours. After undergoing numerous tests, CT scans, and even a referral to a lung specialist, my neuro said that my chronic cough is likely centrally mediated (whatever that means) and caused by lesions in my cervical spine. No one that I have spoken to on social media, etc. has ever heard of this issue, but I've had several neuros confirm that MS is the likely culprit.
I've decided that I was weird before MS and it's only right that I'm still weird with my crazy symptoms. 😜 I'm very blessed that I'm relatively healthy, not in pain, and have all of my mental facilities (most of the time).
Thank you for sharing this topic with us as it's greatly appreciated. Patients (such as myself) sometimes need someone who has knowledge and experience to talk to regarding this crazy disease.
You sounds like an #MSWarrior Athena! Thank you for watching and thank you for sharing here. Did the sense of smell every come back? Has the coughing continued?
The smell and taste eventually (5 or 6 months), but not in time to smell my baby's "new smell". The owner of the Thai restaurant I go to was convinced that I was going to cause "holes in my gut" when I kept asking for hotter and hotter, but it was only because I just wanted to taste something...anything really. My cough has never abated unfortunately. Thankfully my regular doctor prescribes medication with hydrocodone, as that's the only thing that works. I'm so thankful all of my doctors work together on controlling my MS issues!
I'm glad that at least you regained some smell and taste back! Thank you for sharing with us here Athena. I and others learn a lot this way!
Before diagnosis, I'd lost much of smell. Since going on medicine a year ago, it has come back somewhat.
Aaron Boster MD You're doing a wonderful thing for these people, many that may suffer alone. 👼
I know the video is older but after watching it I wanted to share. I had trigeminal neuralgia and possible seizure as my first symptoms of ms. And within a year diagnosed due to numbness but at my one year mark after starting ocrevus I got hit with a severe cognitive relapse . I couldn't think clearly. My speech was terrible , stroke like and it lasted two weeks. It was very scary. I couldn't find much info on it being sudden and to that severity and seeing this video lets me know why! Thank you for all your great information.
Thank you so much for the videos. Have you ever seen muscle spasms in the lower back? To the point where the person can’t walk for a few days?
I had high blood pressure during my initial attack - over 180/110, this past March. I have normal blood pressure typically and have never struggled with this previously. My blood pressure is now resolved nearly six months after my initial attack, and it went down slowly over several months. None of my doctors believe it is related to my MS, but I do.
Glad your BP is back to normal Arella! #WeHaveMS
I agree with you. I had a similar experience and there are some NIH studies that found connection between spinal issues and blood pressure. My lesions are all spinal cord and brain stem, including areas that regulate BP. Hope you found relief.
A vibrating jittering trembling feeling that goes from my chest down through my abdomen, groin and to the tops of the front of my thighs. I always wake up with it and now that it is 3 a.m. it is back. It's like an earthquake under my skin. It's horrible. Right now it's been happening for an hour. I used to think it was atrial fibrillation, a racing heart but that was ruled out.
I also can't walk due to getting totally out of breath after a few steps and have to sit down. That happened suddenly one night. I was bedridden for months and now can walk about ten steps but it takes all my strength to do it. It takes me 15 minutes to catch my breath.
Omg!! Yes!! Thank you!
YW Christelle!
I also get tremors, migraine headaches, I have a brain stem lesion, it makes me unstable on my feet, and I get dizzy very easy, the bright sunshine and bright light💡 really do a number on me as well, your video has been helpful, please do more
TY for sharing Shirley! #WeHaveMS
I get migraines that feel like my head is swelling,the dizziness ,sharp random pains in wrists toes fingers etc takes DAYS for it to go away and slurred speech
I had uncontrollable hiccups since i was 19, before i was diagnosed with MS, i used to hiccup at least once every hour, it was embarrassing and I didn’t link it to my MS until a few years later, i went to a doctor and they just gave me meds for stomach acid (gaviscon) but it didn’t go away, at age 24 i was diagnosed with MS, and as soon as I started fingolimod and took steroids to control my first ever attack, I noticed that my hiccups disappeared. Nadine from Jordan - 26 years old
New to this channel. I like how you present your channel, so many seem unapproachable. I'm in limbo waiting for diagnosis. I have lots of odd symptoms and the usual ones but at the moment I'm having profound fatigue. I'm almost nocturnal as I can barely keep awake during the day. I'm waiting to see if the seizures I've had are epileptic or not and awaiting MRI results.x
Welcome to the channel!
Thank you for your wonderful channel. I've experienced a distorted sense of taste. I could only stand eating bland foods. It came after brain stem seizures which were also very hard to deal with. After that I went into a 20 plus year remission.