Multiple Sclerosis (MS) - please introduce yourself
Let's talk about living with multiple sclerosis.
As Community Director of Connect and moderator of the Brain & Nervous System group, I noticed that several people were talking about MS, but those discussions were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.
Grab a cup of tea, or beverage of you choice, and let's chat. Why not start by introducing yourself?
Interested in more discussions like this? Go to the Brain & Nervous System Support Group.
I have posted a number of times under Spine Health as I was diagnosed almost 2 years ago with NMOSD (neuromyelitis optica spectrum disorder). I am not sure this is the correct group to post, but the symptoms of this disease often mimic those of MS and makes it difficult to accurately diagnose. Here is my question: Is there a test for MS? According to several neurologists, you can be tested for NMOSD with a blood test called AQP4-lgG+ that looks for antibodies called AQP4. If these antibodies are found in your blood, it will confirm that you have NMOSP and not MS. If the test comes back negative, you are quite likely to have MS. Any validity to this? I have had numerous blood tests over the last 4 years since my symptoms began to appear: numbness in lower extremities, balance and walking problems, foot drop on my right foot, muscle and joint stiffness, spasms in legs, etc. I do not recall having this specific blood test nor do I recall my neurologists ever telling me my diagnosis of NMOSD resulted from this test. How do I know if my current diagnosis is truly NMOSD and not MS? I am 73 years old and currently in my third go round with infusions of Rituxen, with no decrease in symptoms, only worsening of above symptoms to date.
Does this clinically sound like MS? To begin, I had a craniotomy in 2014 to remove a benign brain tumor from the left frontal lobe that was causing vision loss, the worst migraines I’ve ever had, and many other issues. Since 2020, I’ve noticed random nerve pain in other places on my body outside of my head. Random hot spots that feel as if someone is holding fire to my skin. Not hot to the touch, not red to the eye, but hot from the inside out. These hot spots are in the middle of my right buttcheek, top of my right foot, on my thighs. Randomly, I’ll get zaps of nerve pain down the middle of my back if I move my head down, like touching my chin to my chest. The muscles in my legs and thighs spasm, my feet throb and tingle to the point of tears, my feet and hands throb and go numb. It hurts to walk. I have night sweats, cannot empty my bowels (it’s as if the nerves of my colon/rectum are dead), the eye pain when I move my eyes. Very blurry vision. Double vision. Tired regardless of the amount of sleep I get. Slurred speech, very bad heat intolerance; the list goes on.
I saw an MS specialist one time in 2021 when it felt like my entire body was attacking itself. He found a lesion in the periventricular area of the brain, which happens to be the location MS is prone to be found. He said it’s been there and always has been, just wasn’t caught on scans from 2014. He did a lumbar puncture, but I had no obands. He said had I not had the tumor removed in 2014, I would have a clinical diagnosis, less the protein in the spinal fluid since I have symptoms and two tumors. He tested the strength and quickness of my legs; my left leg showed slowing and didn’t respond as quickly. He sent me to see a psych when I mentioned how bad my memory was and how badly my brain fog was making my everyday. It’s caused me to leave on stoves, ovens. I’ve even forgotten to take care of my hygiene. I saw the psych as asked, who diagnosed me with conversion disorder, all because I cried when he touched a few nerves about an abusive past I had. You guys, I’ve been to other mental health specialists who have said they can’t diagnose me with anything and they know something real is going on. So, I gave up trying to get answers. Eventually, the symptoms either went away or were so normal I just ignored them. This was two years ago.
Over the last week, it seems I’m having a bad flare of something. My body is attacking itself again. I haven’t been able to have a bowel movement all week, things to help with that aren’t working. My stomach is bloated like I’m pregnant. The nerves all over my body from top of head to toes are randomly zapping me, causing me to cry out loud again. Sometimes the zap is so strong, it makes me fall. My legs from the middle of my calves down are painfully tingly. There’s a spot on the inside of my right foot that burns like fire. I actually caught a skin color change this time. When the pain stopped, the red went away. Last night, my left foot felt like a block of ice while my right foot felt like it was on fire. They were both red, but very different in temperatures. The muscles in my legs spasm. It hurts to walk again. My eyes are very painful to light. The nausea, can’t eat, can’t drink. It’s like my body is short circuiting.
I see my neuro on Monday. What should I ask for? A better work up? The longer this goes on, the worse it gets.
Hello @tadams1129 and welcome to Mayo Clinic Connect. I wanted to more quickly connect you with others who have, or suspect having, MS so you will notice I have moved your post here:
– Multiple Sclerosis (MS) – please introduce yourself: https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/
Members such as @upnort @hanna4 @ekelks and @nightops have recently shared in this discussion and may be able to come back in to share more with you.
Your appointment is today, so here are some additional pieces of information that could help guide your discussion and questions:
– Multiple sclerosis: https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269
It will be good to learn what you hear from this appointment!
I'm no expect, but here's my understanding: there's currently no conclusive test for MS. The best they can do at this point is MRI w/wo contrast on brain and spine to look for lesions, and then pull CSF to check for oligoclonal bands – which verifies demyelination has occurred. When used in conjunction with symptoms, this typically gives doctors enough to form a diagnosis. When used with treatment options and follow-up MRI's, that can help solidify the diagnosis.
There is formal criteria that can be used to "diagnose" MS, the McDonald Criteria (https://mstrust.org.uk/a-z/mcdonald-criteria).
Sorry to hear about your struggles! I'm still new to this world, but several of your symptoms definitely send yellow flags up.. Your zaps of pain when moving your neck sounds a LOT like Lhermitte's sign to me. If you're struggling to get someone to really pay attention to all of your symptoms to get a concrete diagnosis, I'd reach out to try and get an appointment at the Mayo Clinic closest to you. Another MS specialist I'm particularly paying attention to is Dr. Aaron Boster (The Boster Center for MS, Columbus OH). Getting more opinions never hurts.
As for what to ask your neuro – I'll defer as I'm still learning, but it does sound like a full review is in order.
I am so sorry for your pain. I hope you get some answers. I have been searching for answers myself to some mysterious symptoms. The most recent diagnosis for me is Migraine associated vertigo and Fibromyalgia, I was tested for every Neurological and Rheumatological disease under the sun. Some of your symptoms sound to me like they could be migraine related, just based on my life long migraine history. Have you ever been treated for migraines in the past? I actually didn't know that they can cause symptoms without the actual headache pain. I only found that out when I went to a Neurologist at Cornell.
Best of luck to you,
My husband diagnosed with MS in 2020. Had one small lesion in the frontal part of his brain and another small one on his pons. Symptoms that led to this were numbness of whole left side of his body. Bloodwork, MRIs, spinal tap. Dr kept asking my husband if he ever had a bad virus of some sort. Mono was one thing he had. Nothing else that we know of. He went on glatiramer acetate injections for the MS. 5 months later shooting pain in his upper left side of jaw and face. Dr said Trigeminal Nueralgia. No compression of nerve. He said secondary to MS. Put on carbamazepine and developed hyponatremia. Any medication he takes seems to help for a bit and then becomes less effective and he has to switch. The facial pain is intense and almost seizure like in nature. Missed 5 weeks of work in 21 and 22 due to this pain resurfacing and tried nerve blocks, but they made it worse. It was awful. Our third neurologist really tried to address the pain and it’s the most controlled it has been. Always a shadow pain though and things like constant wind on his face bothers it but nothing like brushing teeth or eating or talking. And then it just hurts and it isn’t related to any triggers like with classic TN.
Then went to another neurologist and he didn’t think he had MS after seeing MRIs. He sent him for a PET scan to check for neurosarcoidosis but negative. The fellow doctor didn’t think enough evidence to support MS, but after PET scan the main doctor stuck with MS since there was no inflammation. Now he wants him to go to a neurologist specializing in headache pain. He has tried this before and it was unbearable for him on headache type medications until he went back on mediation to address nerve pain. I’m so confused.
He takes Topiramate, Vimpat, Amitriptyline, Lexapro. Recently got himself off Pregabalin. Still takes Glatiramer injections for MS but soon switching to Abagio. Has right leg and right hand difficulties. He is only 50 and we have four children. He became severely depressed and anxious with this facial pain. I can’t find anyone that has presented like him with his pain. I feel if I could, then maybe this would make more sense. They just keep saying facial pain is commonly caused by MS.
Has anyone had a test to see if there is demyelination of nerves that would cause this pain? Do MRIs show this?
Has anyone switched from Glatiramer injections to Abagio?
Does anyone else have only 2 lesions and increased O bands and been diagnosed with MS?
Does anyone have a lesion on their pons with MS?
Has anyone experienced terrible one sided facial pain with their MS?
I have been on MS society and no one has had a similar conversation experience.
I've been battling with brain fog and balance for 3 years and high cortisol levels for at least a year. After changing my sleep cycles to night time, exercising and whole foods and recently a low carb and high fat, I think I have turned the corner. The body is very complex, and problems often manifest in other areas. I think high stress over many years has given me leaky gut. Food goes through my stomach wall and into my blood and my body tries to react to it. Something like a form of inflammation, that then raises my cortisol which puts me in a flight flight mode and then my hormone balances are all over the place and my brain shuts down. It has been so bad at times I felt like I was going to die.
I have done a ton of reading on this but Dr Terry Wahls on MS on youtube is a good start.
For all health conditions, healthy eating like we evolved to eat 20000 years ago, ie natural foods, exercise, fasting and a proper sleep pattern with give you the best fighting chance. Especially true about the brain and stomach repair.
Keep a diary and see if you can notice any changes each day. Mine was actually a 3-4 day cycle but carbs was my problem.
Thank you for your response. My husband was on the Furhman diet for a long time and dropped to a really healthy weight. He also never got sick. It was an extremely difficult diet to keep up, no meat, diary, sugar. It makes sense this would help. He also has the book by Wahls. I’m sure some adjustments with diet would help in order for him not to feel the pain he has. We will look into this again. The difficult thing about looking at other people’s success with diet is that their symptoms are not the same and then you feel defeated.
Hi, my name is Tonyia and I have been diagnosed with MS for 37 years. Symptoms started in college but I was diagnosed with mono-like syndrome. I was diagnosed with relapsing- remitting MS and became worse after birth of 2nd child. I was employed as an engineer for 24 years until I had horrible spine pain (paraspinal muscle spasms only relieved by Botox injections). I mostly suffered from pain, muscle spasms, rigidity, neuropathy. I had an episode of blurred vision. Most relapses I experienced numbness, weakness, neuropathy (right, left or both sides of my body, but worse in my hands). I was blessed to remit so I could play oboe, do gardening, ceramics, bike rides, short hikes unless it wasn’t too hot ( heat sensitive). Sometimes a cooling (ice) vest helped me stay out. But if too warm, I did indoor activities like movies, plays, concerts or visit museums/galleries. In last 5 years or so, I now have active secondary progressive MS. Which has slowed me down; loss stamina and fatigue easier; muscle spasms, pain and rigidity is much worse – some time’s debilitating. I had to get a knee replacement for damage in my knee and contracture (couldn’t straighten my right leg to walk). I tried various DMTs: Betaseron, Avonex, Copaxone and Gilenya. I stayed on Copaxone until now we assessing whether to start me on Ocrevus to help manage my MS. My recent relapse was after mother passed away 9/2020 and terrible business with settling her estate with 2 younger brothers. Now both parents and a older/younger sister are dead. I miss my mom and older sister; we talked about everything and shared same hobbies/interests. I had my worse relapse in 30 years after settling mom’s estate. Loss father-in-law one month after my mom; too much sorrow. I have remitted mostly, new lesion located in frontal lobes, worse muscle spasms and sciatica from piriformis syndrome. I feel I have progressed more during the Covid pandemic; more isolation and less physical exercise and activity. I did have a right bunionectomy and a right knee replacement (improved walking and climbing steps). I had eye surgery to cosmetically move my right eye; nerves causing it to drift to the right more. It made my children and their friends happier for me. (All boys – smile). My stamina and fatigue is worse which frustrates me. I can play oboe but very exhausting after 1 hour. Cognitive skills are a little slower: word recall. I do enjoy reading/listening to books and listening to music, and still garden but very slowly.