My MS Story | Diagnosis Took a Long Time
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- Опубликовано: 26 сен 2024
- In this video I share my Multiple Sclerosis (MS) diagnosis story. Even though I was diagnosed in 2017 the story goes back more than a decade before that! It can take a long time to get diagnosed with MS then start treatment. Watch to find out how I was finally diagnosed with relapsing remitting MS.
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Nice video. Very proud of my wife!
You’re an amazing supportive husband! I’m lucky to have a supportive husband too!
Hi! I am a clinical neuropsychologist with hospital practices.
MS has lots of treatments, when people say to me it is neurodegenerative I say aging is neurodegenerative as well and people don’t stop their lives to think about their aging future.
Self-care + good neurologist+ change life style will make all the difference.
There are lots of great researches going on and the disease is changing its course into a controllable one.
Everyday remember to be kind to you ❤️
Thanks Jane! 100% agree. Four plus years later and I am still doing well!
@@EvenSoItIsWell Your video is great , very informative and it is so good to hear you re doing so well, it show that it is possible, we have to highlight the good sides! Love to know you re safe and well.
I am 73 & was diagnosed with MS at age 34yrs. I journey for sure with all of the same symptoms. You were lucky to be able to go to a MS center, in New Brunswick Canada there is nothing like that here. God has been good to me as I am able to walk & carry on with life, slow going.
Thanks for watching Katherine. Good on you for carrying on!
You have the best attitude! My mom had Parkinson’s Disease for 21 years and it took a while to diagnose. It seems like Neurological illnesses are much more difficult to diagnose. I’m praying for you!
Thanks Jules! They are indeed difficult to diagnose. I work on my attitude daily; meditations, prayers, and I work with a therapist regularly.
Hi! Fellow New Englander here! Your video was in my feed a few days ago and I have been binge watching ever since! I am always amazed at people's diagnosis stories and how it took SO long to get a diagnosis. I had relatively mild symptoms for years, which were misdiagnosed as depression (etc). My first real physical symptom was Christmas time in 2015. I went from numbness of one toe to unable to walk within one month's time. Though hesitant, my doctor sent me to a neuro, who wanted to take a "wait and see" approach. Finally, on a follow up appointment, when it took me forever and a day to wall walk my way to the exam room, he sent me for an MRI. I got my dx, which he also used a nice word "benign MS" only to refer me to a specialist, who then told me I had many, many lesions on my spine and in my brain. I have been looking for information on how/what to eat with MS.....so THANK YOU so much for your videos! I appreciate every one of them! It truly is a devastating diagnosis to receive.
Hello my New England friend! It gonna be a hot one today! Stay cool. Thanks so much for watching! Yes, it is a devastating diagnosis, but over time (a long time) I have grown to see my MS as a condition I live with. We all have something a disease or diagnosis… MS is mine… I do my best to manage my symptoms and support my body. There is a lot of acceptance that had to happen for me to get here. Yep, I have MS, yep I have symptoms, yep the future might be uncertain… but I have this amazing life, and in many ways I am healthier and happier than I have ever been.
@@EvenSoItIsWell Yes, it is going to be hot! I'm a rare cold intolerance MS'er so I embrace to scorch of the summer sun. I'm in Rhode Island, btw. You're absolutely right, acceptance and finding your way to live your best life with MS is key. After 8 years, I am getting there. I am still in the trial and error phase of how to keep my body feeling the best it can. I look forward to watching the rest of your videos! Have a great day.
@@ahoarsewithnoname oh nice! Enjoy the heat!
Wow!! I thought I had a story!! The road to diagnostic findings can be difficult and long. My diagnosis was rather quick but getting there was years and years of random symptoms and doctors’ appointments with an array of doctors like you. I’m thankful for a physical therapist who noticed my body being weaker on one side and writing to my physician to say, “order an MRI on the cervical spine” and thAt got the ball rolling!
Isn’t MS an odd disease? I sometimes look back and wonder how many years I have had it? 20? 25 years? So glad your PT noticed the weakness. How are you doing now?
I have the same issue with weakness on the right side, but my brain MRI showed no lesions I demanded to have a cervical and Lumbar MRI and my f***ing neurologist said is not needed. I’m so angry I have 10+ symptoms of MS
I’m glad you are happy and doing well ! It gives me hope ! I have some issues also ! It’s been 10 months but nothing shows ms so it’s a long journey just to receive an accurate diagnosis!
It really can be a long journey! Keep advocating for yourself and seeking answers. I know it can be frustrating, time consuming, and exhausting. Getting the correct diagnosis is so important.
@@EvenSoItIsWell yes with me it’s difficult due to intestinal issues! I wouldn’t be able to steroids and immunosuppressive medications! My issue all started with stress! I banged my head on the wall really hard and I developed symptoms shortly after ! Maybe 3-months ! There is a place out in India that has some herbs that supposedly halt ms but not cure ! That is my next stop for sure if it comes down to it! I have taken the liver cleanse herbs that Ayurveda offers and they work well !
Thank you for sharing your story Vickie. Good on you for not getting the spinal surgery. I was diagnosed in April 2021. I developed progressive upper left sided numbness, had an MRI and was diagnosed with MS. The neurologist confirmed this diagnosis in May. Even though I knew that I was going to have the diagnosis confirmed I couldn’t help feeling shocked and overwhelmed - so can relate to how you felt. I remember sitting opposite the neurologist (as he started talking about treatment options) and thinking I’m not able to take this in and I’m finding this more difficult than I thought I would! Hugs Jane
Hi Jane. Wow, you are really newly diagnosed. Be gentle with yourself. It can can a year or two to really wrap our heads s diagnosis and how to manage it. I hope you are doing well!
@@EvenSoItIsWell thank you Vickie x. Love your channel it’s so full of positivity and inspiration💜
I do not have a diagnosis yet, but after researching as I wait for my first neurologist's appointment later this week, I do not doubt it. When I learned about the different kinds of fatigue it was like I hit a brick wall to wake me up. So I started exercising this past week on Monday, It was so hard to keep going last Friday, it was all willpower and no energy. But this week I have come home after my morning workout and did some things I have wanted to do for a while! I am starting to feel less fatigued and that is huge! I was diagnosed with Mono in July and had to feel some energy before I could work out, it took months to overcome the mono. But now I feel I can do things again and it is wonderful!
Thanks for warning! I am so glad you are feeling better! The fatigue can be so difficult.
Thank you so much. I have not been diagnosed with MS but have had all the tests I have heard about. Many symptoms but was also diagnosed with several other issues through the years, so finally get to see my Neurologist again next week! Desperately needing some answers!
Good luck next week! Let me know how it goes!
Thank you for sharing your experience and journey to diagnosis. I have been experiencing ms-like symptoms for I figure about 20 years.( gradual onset) I've had two MRI's and they found two small what they call "non-typical" lesions. No diagnosis at this point, I was very symptomatic with balance and gate distubance, vision issues, muscle spasms, numbness ect.. but after reading "the Wahls protocol" have adopted a very different diet that seems to be slowing the progression of this disease. I don't know if I will ever be diagnosed because I don't have good insurance, but I am hopeful for the future because of my faith in God and the improvements I've seen with changes in diet and supplementation. This can be a lonely road at times, even well meaning people have a hard time understanding what your going through. But videos like this one of yours can be such a comfort and encouragement. Keep up the good work!
Hello Carol. Thank you for reaching out. I agree it is difficult when people don’t understand. They say “You don’t get it, until you get it.” I had no clue about MS or any chronic illness until it came knocking at my door. Wishing you well!
Wow, your story is very different than mine. It sounds like you had some excellent medical options along the way to help find your dx. It also must have been super helpful to have that awareness that it _might_ be MS so that you could do your own research as well. When I was dx, it was completely out of the blue. The previous year of testing (2 MRIs, and the usual in-office reflex tests, etc.) were done with no indication that it may be MS. My symptoms that led to the testing were so minor that no one was very concerned. Even when I was finally diagnosed, she wasn't sure, and I think she was even googling some things at the time to make sure. Thankfully, my first MS neuro was near the end of his career and had a lot of helpful info for me. He had gotten to a point where he no longer recommended the DMDs because he didn't see them doing anything more for his patients than healthy lifestyle could achieve. I miss him!
We all have different diagnosis stories don’t we? Further indication that MS is indeed a snowflake disease.
Hello, there! Thank you for sharing your story! I suppose I should tell mine soon. I was diagnosed with MS last November and was put on the Ocrevus protocol. My second MRI is tomorrow morning. Best of luck to me tomorrow and in the future as well as to you! Let's hang tough!
Best of luck with your MRI! You absolutely should share your story! We all have something to share that could help others. Let me know how the MRI goes.
I was diagnosed with fibromyalgia/chronic fatigue syndrome seventeen years ago. I had to leave my job. Last month symptoms got strange. I had muscle spasms down my legs, a foot that causes me to trip and has for years (thinking I was just lazy walking) and severe pain down my right side and in my knee. The calve and thigh felt heavy and swollen even though it wasn't. My knee is in severe pain and hard to straighten. I ended up in the emergency room on a steroid injection and sent home with prednisone. I get numbness in my fingers and numb places in my face and on my legs. I am suspecting I could be dealing with MS as well. Thank you for your story. Btw I was diagnosed with sciatica and sent home.
Hi Gina! Very similar symptoms. Keep advocating for yourself. As you saw I spoke with many doctors trying to get to the correct diagnosis. Keep me posted!
I’m from eastern Connecticut. I live in Minnesota now. I have my first appointment with the Minnesota Center for MS on January 10th. After such a long time suffering I hope for a treatment plan to start soon. Anyway, I watch your channel and have hope. Thank you for sharing your story.
Thanks for watching Chris! Eastern Connecticut is awesome, isn’t it? Good luck with your appointment. Keep me posted.
Thanks for sharing your story Vicki, I'm so sorry you have this illness but your fabulous attitude will go a long way I'm sure to living your best life! Best wishes for a slow down if not total stop to symptoms.
Hi Pam! Thanks for the wishes and thanks for stopping by my channel.
Thank you so very much for sharing your video. I also Am a Patients at the Mandel MS hospital and I see Dr. Wade in Connecticut. It’s also nice to have a glass of wine now and then so take care of yourself and stay well!❤️
Fantastic! The Mandell Center has been wonderful for me. I see Dr. Bailey there and she is so kind and attentive. Cheers to your health!
I LOVE your personality. This video is great!
Thank you Jennifer! What a kind thing to say. Welcome to the channel!
Thanks for sharing your story. You so positive and strong. Your skin looks beautiful. Diet plays such an integral role in our health. It's important to know that it can be manageable, that people can still be independent and live with dignity.
Thank you. Yes, diet and life style do play such a critical role in our health and well being.
Hi there! I live in Connecticut as well and have been on a long journey trying to find out what is wrong. I literally walked out of my MRI today because of a panic attack. That’s how I stumbled upon your channel. Thank you for sharing your experience :)
Oh Dawn, I am sorry that happened but I can so relate! I am also an OMS (Overcoming MS) ambassador. Our circle (group) is meeting virtually during the pandemic. If you are interested in joining let me know.
Somewhat on the journey. You have a good exhuberance and positive outlook to bring to the party . ❤❤thank you
Thanks for watching David!
Thank you for sharing the wonderful and encouraging update Vickie. Your positivity and great attitude are absolutely refreshing. God bless ....you are an inspiration for all people with MS out there
Thanks Helen! Welcome to the channel and our community.
Thanks for sharing - I too ignored signs for 12 years until I was diagnosed 6 months ago.
Welcome to the community Garpot! I am glad you received your diagnosis. Now you can move forward with a treatment plan and how to live well with it! How are you feeling?
Hi
Thankyou for sharing your story. Sending you lots of love.
I’m not sure what’s wrong with me but iv had significant symptoms since 2011 and some other symptoms for a few years prior. Firstly I thought I had CFS or Fibromyalgia and so Drs instead of testing me just said yep I guess that’s what you have. It’s been touch and just ignoring it as best I could. Unfortunately I can’t ignore it anymore. Both the flu vaccine, lockdown and the Astrazeneca vaccine caused relapses and I still have until 18 dec until first appointmentwith a neurologist.
Sending you lots of love too. I hope you get some answers when you see the neurologist. Keep advocating for yourself! And taking good care of yourself.
Happy Anniversary- It’s May 25 2023. I hope you’re doing well. Btw, have you experienced “phantom wetness” sensations on both legs?
Thank you!! My sensation loss is permanent unfortunately but it isn’t too troubling.
Best Wishes to you and hang in there I really like your Positive attitude and thoughts on my Life as a Truck 🚚 Driver of which I could no longer do , Due to Mental Breakdown " I Wish you The Best of Heath, and Keep on Trucking "
Thanks for watching!
Thank you for having a glass of vino! I have been told or 'advised ', that disabled people shouldn't ever drink alcohol! Boo! Well I was diagnosed in 2017 6 weeks after taking voluntary redundancy from a great globally travelling role, spent 4 months in hospital, finally came out in a wheelchair, then a stick but no more! Anyway, thank you for showing that we can still have an alcoholic beverage now and then!!! Xxx
Cheers Sally!! Moderate alcohol consumption has shown to help in some studies. I follow the Overcoming MS (OMS) program. Here is a link to the information overcomingms.org/latest/holism-paper-shows-smoking-harmful-ms-alcohol-only-harmful-excess. I am not sure who advised you but the OMS program is evidence based and many are having amazing results following it.
Your patience is commendable. My dad has ran into spinal surgeons like that, they can be so rude and egotistical. Glad you didnt get that surgery.
Thanks me too!! It has been my experience that surgeons want to do surgery! 😉
Thanks! My wife has been diagnosed with MS this year at the age of 39😒.... but you are a motivation!
Thanks for stopping by W. I am sorry your wife was diagnosed. The first year or two can be difficult as there is a lot to process. Give her my best and let her know it is possible to live well with it!
You are so positive. This has been very helpful. Thank you.
Thank you Erin! I am happy you found it helpful!
What can i say other than that is was very nice to listen to the way you spoke and explained your situation, so you got a new subscriber and i look forward to hearing more from you and your journey with MS.
Thank you! I love building this community. Let me know if there are any topics you would like me to cover.
Very well done and spirited first video. Look forwards to more content!
Thanks! Look for the next video tomorrow!
Love your vids! Iam in the process of being diagnosed myself. Seeing neurologist in April and and having tests. Iam having numbness on the left side, involuntarily movement, neck pain, dizziness and nausea and other symptoms like extreme fatigue and insomnia and I can't type and her and sometimes use voice oh and my voice is quivering too. My name is Michael
❤
Thank you Michael. I am sorry you are experiencing all those symptoms. I hope you get answers soon but start where your are and take exquisite care of yourself!
I had a lesion in the brain. Nerve issues in tongue and leg and foot. They say it's neuropathy but my blood sugar is 90 to 100. I don't have diabetes. I think I have MS. Because it lasts 3-4 months then all of a sudden It goes away for months to come back like an attack again. Still not diagnosed. Doctors say I'm perfectly healthy and fine.
I am sorry you are experiencing symptoms. I encourage you to continue to advocate for yourself and seek answers with second or third opinions if needed.
Hi Vicki my name is Lorie, I am 61, and I too live in Ct! I found your channel in this past week of hunting for answers on the internet.
First thing is ,the words Multiple Sclerosis weren’t on the map till last night……
Last month as a last ditch effort to get some sort of resolution to a litany of symptoms that seemed to change and morph daily and weekly..getting treated like a hypochondriac is a real problematic when you are dealing with a chronic illness.the staff was just not supportive….in short…I went to the emergency room after on month of excruciating symptoms…..I sat in a transport wheelchair for 8 hours waiting to be seen… the doctor who saw me said he cwas not allowed to image my spine but suspected costocondroitoitis of some form …he gave me an injection then an injection of something as my body sr tarted to do spastic stuff…. A weak later I started essential tremors in right hand weak thighs vomiting migraines every night lost 40 pounds crawling skin zap on faces numb face and scalp choke on spit all the time . I have been waiting since Halloween for my referral and MRI appt… they assure they have not forgotten me…… just need a friendly and postive face
Hi Lorie! And CT neighbor! I am so sorry you are experiencing all of that! I encourage you to keep advocating for yourself. Keep,asking for second opinions and referrals until you find answers. Please keep me posted on how your MRI goes.
You are a powerful and ery intelligent lady.
Thank you.
Omg that first surgeon!!! So important to take your time and get a second opinion.
Right? I have to wonder how many people have received unnecessary surgeries. Thanks for stopping by and leaving a commment.
I came across your video..I wont give up wow sounds like me..I know I have ms..and wowww I know how you frustration .ty for sharing
It just hasnt shown yet .smh I have 2 dropped feet already it's been 4 years since symptoms started terrible spasms in my legs ,now neck and face
@@karigibbons5239 keep advocating for yourself and keep asking. I know it is long and frustrating. I hope you get a diagnosis soon.
got diagnosed 2 days ago. I'm 21 years old and I feel like my life is over.
Oh Jules! No, your life is not over by a long shot. Feeling this way is completely normal though. It is not easy to hear you have MS but, trust me, it will get easier. Give yourself time to process and grieve. There are so many things we can do to live well with our MS. Please be gentle with yourself as you process this.
@@EvenSoItIsWell thank you for taking the time to say these kind words to me. It helps a lot
Thank you for making this video.
You are welcome! Thanks for watching!
Lovely video, gives people with ms hope. I've had ms 27 years now. I fight it every day.
Thanks Debbie. You are a veteran at his now! I hope you are well.
Methylcobalamine deficiency specifically can cause a huge list of MS symptoms. Watch this video to the end, and take good notes. ❤️ DIAGNOSING AND TREATING VITAMIN B-12 DEFICIENCY. That title exactly. It's made by several medical specialists. Regular medical doctors and nurses are not trained properly in this subject (at all ) im begging you, even if you think you already know everything about this subject, i guarantee you don't. Watch the video above. It could save you from miserable symptoms that get progressively worse and worse, even blindness, incontinence and and paralysis. Just in case it might help, it's really worth taking the time. Blessings to you all. ❤️
Thanks for watching Debbie. Yes, deficiencies can cause a lot of symptoms.
Somehow you make a tragic scenario entertaining , then uplifting, then inspirational with hope. Not too many people can do that.
Thank you. This diagnosis is definitely devastating but once we get past the initial shock we can live well with it!
@@EvenSoItIsWell I have neuro Bechets, which has many of the same bio mechanisms as CIPD, MS or GB. I was put on a Blood Pressure medication called amalodapene and 3 hours later after my BP dropped so low I stroked, then the gates of autoimmune hell open. I lost all feeling right side of body and each day since more is attacked. My left is being attacked barley in check on 40mg of prednisone. The wrong doctor can kill you or put you in a wheelchair. I told him over suppressing my BP could cause an ischemic event and set autoimmune system wild. My fault, I should have put my foot down. But I want to thank you for being a level headed inspiration just when I needed it most. We have a lot of similarities in symptoms.
@@bcabmac Holy gawd! I am sorry that all happened to you. That is a lot to process and deal with. Please be gentle with yourself as you move forward and try to regain your health and well-being. Try not to be hard on yourself for what happened in the past and look forward to making healthy (and strong choices) in the future!
After being complaining for over 16 yrs ,i finally went to the proper doc , a neurologist who diagnosed me with ms
But too late ,damage is done
Footdrop ,brain fog, fatigue, vertigo,
Etc....but i persevere to do my best ....abit slow but am still mobile
Husband was never there to support or believe i have this condition.....
Just merger medical assistance
But meds r expensive sooo its on chronic meds
@@shireenramnarain4005 glad you finally got your diagnosis. Sorry it took so long. Thanks for watching.
Beautifully done.
Thanks Vicky! And thanks for subscribing!
Thankyou for your story..they just saw lesians in my husband's brain..he had chest pains,numbness on his whole side,they did all kinds of test! Was,nt his heart! Thank God! Going to a neurologist today! Gonna find out today what,s going on..
Good luck today! I know this can be a scary and uncertain time. Keep advocating for him and, as hard as it seems, have patience. It can take some time to come to a diagnosis. Keep me posted!
Hi! I got diagnosed on Friday...Im still coming to terms with this. I already have hashimotos to deal with and now this ..but on a good note i like ur video and u hv a new subscriber
LoveOne 1Love Welcome! I am sorry about your newest diagnosis. I know many people with autoimmune disease that have multiple diagnosis’s. Be gentle with yourself.
I have ms. Thanks for sharing your story. I just started medication. You made me feel like I made a great choice
Hi Gabby, thanks for stopping by. Best of luck with your choice of medication. It is a big decision isn’t it?
So well told, Vickie. You show a lot of integrity, positivity and hope :) I wonder have you done any investigation about or testing for heavy metals? Usually that's through a hair analysis test. I'm in the process of chelating Mercury out of my system.
I have not done any investigation into heavy metals yet. I know many people have their fillings removed. I am lucky to not have any.
@@EvenSoItIsWell Well done on having healthy teeth! It can also be ingested through food and get into the body in other ways. For example, I ate a lot of large fish as a child because my dad was a recreational fisherman plus when I was eight, I had daily applications of Mercurochrome for a week following a fall. They may not be bothering you and that's great.
@@HowRebelsHealMS oh interesting! I have never been a fish eater and do know they can have a lot. I have been vegetarian since 2006 and commits to whole food plant based in 2017.
👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻Good for you thank you I just know I have MS al Hamdu le Allah thank you for sharing ❤️
Thanks for watching.
A physiatrist figured out that I had MS as well. I've had MS for over 17 years, and I was undiagnosed for over 13 years. Then I went to a naturopathic doctor and ditched the conventional medical system. Been getting better ever since. :-) Disease doesn't have to be a big deal, but it sure does make a lot of money for a lot of people.
Thanks for commenting! So glad you are living well with non traditional methods. What kind of alternative methods are you using?
@@EvenSoItIsWell I have a naturopathic doctor. I use diet and supplements. I also make sure to do yoga as it helps with symptoms. I wasn't diagnosed until I hit secondary progressive. I'm not completely in remission yet, but I will get there. Thank you for helping to spread the word about natural healing modalities. It's a shame that so many people are suffering due to lack of knowledge.
Fantastic! Wishing you the best on your journey to wellness!
@@EvenSoItIsWell You as well. Thank you.
Thank you for sharing your story. I have been having symptoms since I was 28; I am now 62, but I feel no one is really understanding my symptoms. My symptoms, if MS, are rare, so that makes it incredibly more difficult to be believed. I have extreme BP and HR spikes, and since my MRI is pretty much uneventful and I do not have strength issues, it seems MS is not a consideration. The problem is that I have many, many other symptoms that point to MS, but those are not taken into consideration, I guess because there are supposedly no lesions on my MRI, other than white matter hyperintensities, which have been chalked up to aging. Although microvascular ischemic disease due to age can certainly be possible, I do not believe this is my case because of the myriad of symptoms I have - from large eye cupping, retinal nerve fiber layer thinning, burning, tingling, numbness of arms and hands, odd sensations in foot and around mouth, to trouble moving my mouth muscles to speak - so far, I have been diagnosed with basilar artery migraine, but the medicine is not working too great; I think because possibly it is the wrong diagnosis. In addition to the symptoms mentioned, I have extreme pounding pain in my head and now tortuous artery and compressing medulla. I believe not being diagnosed for more than 14 months has contributed to causing more issues. Just my story at this time.
Oh Julie, that sounds so stressful. Keep advocating for yourself and seeking answers! Take good care of yourself in all the aspects you can.
Let me recommend you to Dr Okolo herbal medicine which we use to cure my mom completely from MS
This was great. I need the info for the diet….thank you x
Thanks Elizabeth! I eat a low fat whole food plant based diet, which means do not eat any animal products, try not to eat processed foods, and avoid added oils. I am actually doing research to develop a course on living well with MS. Part of my research is looking to interview MS patients. Would be willing to take part? You can schedule a time here calendly.com/vickie-hadge/ms_call. If there is not a time that works for you let me know.
I’m really struggling with diagnosis. I have had MS symptoms for years now, but whenever I get an MRI, they can never find anything besides disc issues, minor things. I think it’s because I don’t have access to the right doctors, but i’m at a loss as to what to do. My symptoms are pulsatile tinnitus, tingling in my fingers on my right hand, & tingling on the tip of my nose. I’ve had a few vision episodes. I also had pain on my left foot where I couldn’t walk on it for a month, but was told it was tendinitis. If anyone sees this & has similar symptoms please let me know. I feel really alone, everyone acts like I’m making it up or it’s minor.
So sorry, you are experiencing this. It can be so challenging to get to the bottom of your symptoms. Are you able to ask for referrals or to get second opinions?
Hey, I know that you posted this a while ago, but I’m going through a really similar experience right now and am happy to talk if you’d like
I loved your story telling....
Your story sounds so similar to mine (though I still don't have a diagnosis). At 18 or so had a weird drop foot, couldn't tell I was walking off the side of it. MRI showed maybe "something, maybe nothing. Keep an eye on it". Life got busy. Moved away. Developed trigeminal neuralgia, some leg numbness - can't figure out a cause. Keep an eye on it. Several years later (2 months ago), seeing another neurologist for the neuralgia - notices my wonky gait. Does the neurological testing - "your right side is weaker than your left" (duh). Nerve conduction study done - looks good. MRI done. Haven't heard a thing (and assume I would have - I think it's been a couple weeks, but it's Canada, so who knows (especially if it's another case of maybe something, maybe nothing and not a super obvious thing)). So I wait, and assume it's nothing, just my body being different. My Mum had MS (not that my neurologist asked) so, of course, my mind goes there.
Anyway, just wanted to say that your attitude is amazing and I look forward to watching more of your videos.
Oh yes, it does sound very familiar for sure! Keep advocating for yourself and take good care of yourself. Check out Overcoming MS. There are many things you can do to live well will MS (or other conditions). Keep me posted.
@@EvenSoItIsWell, checking back in with an update, not update. LOL (and will listen to your story again as it’s been a while). Got my MRI results back that show “nonspecific” findings that my neurologist just called “brain changes” (your MRI showed “brain changes”) - my GP was the one that said there were non specific findings, but told
me the neuro should know more. Said sometimes these results point toward MS or other conditions they just don’t know which yet. They’ll be repeating the MRI again in several months to see the progression of the changes. They’ll check on things sooner should I have more clinical signs and let them know (but I don’t love my neuro and don’t really want to talk to him so unless it is something serious I’ll just wait).
@@CapeBretonDoula thanks for checking back in! Good to hear from you. So sorry you are still stuck in limbo. Keep advocating for yourself! Keep asking for referrals if they can’t come up with a diagnosis.
ThAnk you very helpful . Keep well xx
Wonderful job!
Thanks Beth! I appreciate the feedback.
Lucky you have a dx. I had my foot drop about 15 years ago and still no dx. Weakness on same side, tingling, numbness, now head tremor. Going for some scans next week.
Oh no. So sorry that has happened. I hope you get answers soon.
@@EvenSoItIsWell thanks, it's just such a long haul and so obvious to me. Ugh.
On a whim of frustration after a dismissive Neurologist wouldn't diagnose me, I tried finding another. Somehow I ended up at a Neurosurgeon instead of a Neurologist. But he asked to see my MRIs. My Neuro said that the MRI report said I had two small lesions and even though I had lots of symptoms, including a bout of Optic Neuritis two lesions is not enough for a MS diagnosis. The Neurosurgeon looked at them himself and said I had 7 including bilateral Occipital lesions. He said with my symptoms and MRI this looks like MS. He sent me to an MS specialist and within my first visit I got a diagnosis and a Tecfidera prescription. It was a two year battle of not being treated and dismissed. My advice to anyone is get multiple opinions.
and he recommended me an MS specialist. I had
Well done! Good on you for advocating for yourself!
Well done! Good on you for advocating for yourself!
How do you do, greetings from the UK. Ahh ! Yes I joined the multiple sclerosis club also in 2017. I have no strings to hold me up! 🍷👨🦯🕺I levitate on one's travels. I diagnosed myself before I turned up at the quacks 🦆 🕵️♂️🕵️♀️ docticks. MRI scan confirmed progressive ms . Early 2-18 two relapses hit me and for a very short time I was blind. My condition had changed to relapsing and remitting and luckily this enabled me to have a treatment called lemtrada (alemtuzumab) try pronouncing it!.. my ms is still there and is pretty stable I must say. Turning 50 this year! Half a century makes me smile and even more determined to do 50 more. Positivity when it seems like there's none around you. Do something outrageous like chasing the Vickers wife. Life doesn't come to an end just because ms has you in it's grip. Yes every day is different with the challenges. Never give up! We can and will beat ms .😉😁. Right where did I put my roller skates 🐢🐌
Well done Michael! 55 here and living well with MS!
I’m 59 years old and diagnosed 7 Sept 2022 with MS.
Hi Erica! Welcome. Thanks for watching. How are you doing since diagnosis?
@@EvenSoItIsWell I’m still a bit stunned.
@@ericag2233 Completely normal. It can take a year or two to really wrap our heads around our diagnosis.
I have been having eye issues and fatigue that started happening in June. I gets numbness and tingling but it goes away. They thought it was sarcoidosis and ran tests and came back pretty good. Don’t know if I should keep pushing for answers. I also get tremors by my kidneys that come and go. I’m hoping and praying to god it’s not MS or anything eles.
Thanks for posting. Yes, keep asking. You are having symptoms that are related to something amiss in your body. It can be scary to face a diagnosis but getting treatment early can help if it is an autoimmune disease. Keep being an advocate for yourself.
What test showed ms. I have been having trouble walking for 3 years. Leg weakness started in left leg and now right.
It was not one test. MS is a challenging disease to diagnose. I had many blood tests to rule out other conditions, multiple MRIs, nerve conduction studies, and a lumbar puncture. I encourage you to work with your doctors to find out the source of your weakness. Keep asking and advocating for yourself!
Hello, my name is Ali Baba. I’m a reformed usurper of political power. Thanks for sharing. Btw I had a doc tell me I needed fusion in my neck asap, or I risked becoming quadriplegic. Second opinion said that diagnosis was preposterous. 15 years later I still have use of my limbs.....and still working on my diet.
My story is different but not being diagnosed and not being put on pharmaceutical's saved my mobility. I have PRMS 29 legions on brain with black holes. 12 legions on spine. I was labeled a drug addict even though i used my words and said I think I have MS. Despite the blindness in left eye intermittent. My primary did nothing but right on paper work im a drug addict not able to take care of myself despite the lack of drugs in my system that was their reasoning. I had LensCrafter' recommend I see an eye specialist. That is what lead to the MRI's and the official diagnosis.
Wow Mark! What a story. I am so glad you finally received a recommendation to a specialist that led you to eventual diagnosis. How are you doing now?
@@EvenSoItIsWell Im doing ok. I have head aches every night. Leg cramps and muscle spasms. Fir the most part i get by. I eat very healthy follow my neurologist recemedations. Im starting mayzent in march to slow it down. I dident mention dawson's fingers legions. Im very uneducated in ms on terms and still have not really gone over mri's. I was diagnosed 3 months ago have to see neurologist again in 2 weeks
@@markseidel1476 I am glad you are getting by and doing ok. I hope your neurologist can provide more answers for you. I hope my channel can help as well. Check out my videos on MRIs, they may help you when you go into to talk with your doctor.
@@EvenSoItIsWell thanks i going to..
Hi Vicki, I just came across your channel. I was diagnosed with MS about 4 months ago. I went through years of seeing a doctor who tried to convince me my problems were all in my head. After lots of bloodwork, multiple MRIs and a very unpleasant (to say the least) lumbar puncture, I got my diagnosis. Not exactly what I wanted to hear but relieved that I finally had an answer.
It is amazing how it can be a relief to get a diagnosis like this right? But after years of not knowing at least now we know our foe and can take steps to deal with it and live well with it.
@@EvenSoItIsWell yes, definitely! When my neurologist called me to deliver “the bad news”, I was actually relieved😊
Hey Vicki I've just been watching Dr B and he gave you a mention, so I checked out your channel. Enjoyed listening to your experience with MS and how it all started. I've also got my own channel where I vlog about MS. I've too have recently had my very first Spinal Tap back in Feb 2019, it went quite well and I didn't get a headache (lucky) Best Regards - Neil .. oh, you have my LIKE and Sub.
Neil! Thanks for stopping by my channel! I have found your channel and am currently watching your lumbar puncture video now! Great video! So nice to meet you. I look forward to seeing and hearing you more.
@@EvenSoItIsWell Hi Vicki, it's great to meet you also. And thank you for stopping by my channel. I started it in 2016 where I talk about lots of different aspects of MS after being diagnosed in 2013, but having had symptoms since 2007. But now, I tend to Vlog mostly and talk about it's impact on my life. I'm also looking forward to catching up with your channel some more.
This was so good! Congrats Vickie, you rock 💪
Thanks so much!
Thanks so much!
But what did they see? Did they see something on MRI? How did they actually saw something?
Yea, they saw a lesion on my spine in my neck in 2006. In 2016-17 there were spots that could be lesions but they weren’t 100% sure. It took an MS neurologist and a thorough exam, history, and lots of bloodwork to determine it was indeed MS.
@@EvenSoItIsWell thank you for your response 👍
@@marconiki6302 thanks for watching!
Hi I'm Danna
I too went thru MRI 3 yrs back to chk the kidneys I really lost my breadth itt was awful myhusband pulled me out
Oh, I am sorry that happened but hooray for hero husbands!
Very scary story!
Parts of it definitely were, but I am still doing well!
Hello, Very nice & helpful video. What type of diet do you use right now?
Hello Mahe, I eat a whole food plant based diet, take a few supplements, exercise, tress reduction and medication to manage my MS.
Hello interesting story. So what was the determining factors which made the doctors say ms. After so many others didn’t say me initially. Did you have more lesions that developed since your first mri and by time u was at the ms center?
Thanks! It was a combination of symptom evaluation and getting better MRIs on 3T (Tesla) machine.
Its like epidural not that bad
Thanks for watching. Yes, for some it is not that bad, for others it can be quite painful.
Yo I experienced drop foot & numbness last summer & again this summer but this time was drop wrist & weakness in my R wrist. Which I'm still not completely recovered from. It's been almost 2 mths of not being able to move my hand & teaching myself to write etc with my left. I have a neurologist that I currently am seeing for my epilepsy diagnosis I only received a few years back... I want a second opinion but am unsure how to go about it, I'm so confused & after my hospital stay for my drop foot & an eye infection I got discharge being told my symptoms where purely coincidental!! Grrrrrr Am so frustrated. Navigating the health system is hard work. They don't take me seriously. Feel Helpless ATM 😭 PS) I'm 42yr old ATM soon it will be my 43rd birthday...
It is so frustrating! I am sorry you are experiencing those symptoms. Getting a second opinion is a good idea. You can check with your insurance provider to see if they have policies about second opinions and if they have a list of specialists you can see. You can also ask for recommendations from your general practitioner. Good luck and keep advocating for yourself!
@@EvenSoItIsWell thankyou 🙏🏼
So when you had your spinal tap they didn’t confirm that you had Ms ?
Yes, the fluid from my spine was inconclusive. It didn’t show the typical banding of someone with MS. Not everyone with MS will test positive for Oligoclonal bands.
@@EvenSoItIsWell I have a lot of Ms symptoms I had mri they came back normal I did a spinal tap 2 weeks ago I’m still waiting on my results 😢 !
Your MS story never took flight. For example: You didn't mention what caused your MS; How did you recover from your initial foot problem; ...Etc
Thanks watching. Unfortunately they do not know the cause of MS, but since this video was published they have found causal links with the Epstein Barr virus. I did mention the steroid treatment and how yoga did help. Perhaps I was as clear as I could have been on that. Thanks for the feedback.
I have alot of MS symptoms but no numbness or tingling in my feet but in my face. Has anybody else who has MS experienced this symptom?
Hi Sabrina, numbness and tingling can happen in any area of the body. I have a small section of my face that is effected too.
Vicki. Omg I have had symptoms for 4 years.nothing on mri meanwhile 2 dropped feet agonizing pain....uggs ty your story gives me hope
I'm in that weird limbo zone between consultants, trying to diagnose what's going on... But that isn't explaining the weaknesses in my legs. 5 day stay in hospital late July this year (suspect TIA / stroke due to the symptoms) no signs of MS in neck or brain scans. But the scans did show that I have herniated disks in my neck, which would explain the weakness in my right hand. Eventually discharged, with an appointment to see a neurosurgeon.
This week, I had a telephone consultation with neurosurgeon, who decides that my leg weakness symptoms aren't related to my herniated discs, so isn't going to give me surgery to sort the trapped nerves, so I've now been referred to see a neurologist.... Meanwhile I'm still having to walk about relying on crutches... No doubt when I eventually see the neurologist, they'll refer me back to the neurosurgeon...
:-(
Talk about frustration!
Brian I - I can so relate to your frustration. Keep advocating for yourself and seeking answers. I hope you find answers soon!
@@EvenSoItIsWell Thank you! It is unfortunate that Covid-19 seems to be delaying everything at the moment.
Brian I Yes! It seems to take twice as long to get appointments and get tests and get results.
I started getting symptoms for years ago nothing has shown up on the MRI one of my EMG is was abnormal but the last one came out fine yet my physical symptoms have gotten worse now instead of one drop foot I have to drop foot I used to just have tingling on one side of the face now I have it on both sides of the spaces along with spasms along with a diagnosis of dysphasia a diagnosis that showed esophagus spasm 60% of the time and still I can't get any fucking help pardon my French but I'm angry 20 years ago you could get a diagnosis of Ms just alone on physical symptoms so what are we supposed to do until it shows up I've had friends that there's didn't show up for 7 years and seeing Sally story right here I knew I was never alone in this keep fighting we are warriors don't give up bottom line is this I don't care what any doctor says or what any test says God and you are the only ones who know your body the best and we know when something's wrong with us and we know what it is so don't let anybody ever make you doubt yourself that goes for anybody here just keep going don't give up Montel Williams had a hard time getting diagnosis too and so did Selma Blair and they never gave up
I’m scheduled to do the nerve conduction study test April 22. I’m scared!!
Hi Leanne, try not to worry too much. I am not going to tell you it is easy but it isn’t overwhelming. The pulses of the electricity are very short and your doctor should let you know when they will come. If you have a lot of anxiety before you may be able to get some medication to help. Good luck!
Leanne, were you able to get your study done? How’d it go?
Even So It Is Well I did get the study done. The needle EMG shows weakness in my arm. I have now been referred to another doctor to do a couple skin patch biopsies. They are checking for Small Fiber Neuropathy. So that’s the best step.
Leanne-Pepper thanks for checking back in. I was wondering if the pandemic had pushed off your testing. More testing and more waiting, I am sorry. It can be so frustrating. I hope you are doing well otherwise.
did your drop foot go away?
It did! The steroids worked their magic and resolved 90-95% of it. The rest I dealt with by doing yoga, strength training, and walking for miles and miles. I still have symptoms on the left and when I am having a flare I get weakness causing a bit of wonky walking.
Your face is great.What are you use for that?
Good food, lots of water and good lighting. ;-)
Try marma therapy .its miraculous .we are doing in india and got miraculous result
Thank you for commenting. I am using a combination of western and eastern medicines and physiology to live well with my MS. Marma is very interesting.
@@EvenSoItIsWell is marma therapy available at your country ?
@@dhanwantarineurocare9189 yes, I believe it is but I have not looked into it.
Did you ever have lesions on your brain?
Thanks for watching. Yes I do have some lesions on my brain too.
My short story seems awfully similar to yours but I’ve never had a lesion on my spine. I had Covid in December last year then 2 weeks afterwards half my body went numb and tingly then I lost feeling in my foot and fainted so I went to the emergency and they found 3 lesions in my brain suggestive of demyelination. Follow up mri showed new new lesions on my brain and nothing on my spine. I still get tingling and pins and needles everyday but no diagnosis yet. Spinal tap showed ocb in csf but they can’t diagnose me unless I have another episode.
@@hitman262 I am sorry that is happening. Please take good care of yourself and be sure to document any symptoms you may be having, even if they don’t seem related.
Need to talk ..🙁😭
Kalyan’s, I am sorry you are sad. Have you been diagnosed?
In process.. I'm from India.. and facing MS from last year
@@kalyaniborse2133 where from India and what age. It's not common in India. How did it start? From optic neuritis? I am from Indore had an optic neuritis attack have been on steroids for 2 mnths. Am a female. 38 yrs
How are you now?
Doing well thanks! My MS is stable.
@@EvenSoItIsWell how long you have ms?
@@paprikafafaron57 I was diagnosed in 2017 but had my first symptoms in 2006.
@@EvenSoItIsWell i diagnosed 2008..In my 20.
I love this video. I have watched many MS stories but your's is the only one that makes me smile. It's so me for one but you also are not so discouraging like so many others. I have subscribed to your videos. Best of health.
Thanks Joanne! What kind words. So glad you have joined our community.
What an amazing gift you are giving to others by sharing your story. Thank you, Vickie. Be well.
Thank you Karin!
Did u find u had lesion with or without mri contrast?
It was found with contrast.