At age 27 I went to the neurologist after having strange symptoms for about a year. I immediately thought I had MS. However, the doctors think I have autoimmune cerebellar ataxia or some cerebellar syndrome, but no antibody or biological evidence has been found. I even went to Mayo Clinic in MN and they said the same thing.
I’m 30 now and I walk with a cane and have difficulty speaking (scanning speech and very slow). I have a raised optic nerve as well. MRI is normal. My question is: is it possible I do have MS and could it appear in tests later?
Maybe I do just have a Cerebellar syndrome, but with no proof, I can’t shake the idea that I have MS. Sorry for the long story.
-FrenchFryQueen
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Frenchfryqueen
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Hello there! I'm really sympathetic to your plight. I can't even imagine living with those kinds of symptoms and yet not having a diagnosis. I can absolutely understand how lonely and horrible that must be, especially for someone so young. When you have well-recognized illness, you can tell people "Hey, I have MS," or whatever the condition might be (although people still don't get it, they usually leave you alone at that point). There are support groups and tee shirts. But when experts say "You may have this" which isn't really a diagnosis at all, I think that it would be nearly impossible not to try to figure out what's going on yourself. That said, I personally have never heard of anyone with MS having a normal MRI.
Have you been able to get any treatment for your condition, Frenchfryqueen? Or a prognosis of any sort? I imagine that would be difficult without a real diagnosis. Whether you have MS or not, it sounds like you are living with similar symptoms. If you would like to share more about your symptoms and how they affect your daily life, I'm willing to listen. 😊❤️
Thanks for your response! I appreciate your perspective. You’re right, it’s frustrating not knowing or having a community. I usually tell people I have MS if they ask instead of saying “I have a neurological disease.” I guess I could say that, but people usually have a vague idea of what MS is. Not that I want MS. I don’t want this at all!
I’ve had steroid infusions, Cytoxan (which is chemo so I had to freeze my eggs), and I’ve tried Mycophenolate/CellCept. I’m going to try IVIG next - if I can get insurance to approve it. I’ve been denied once because I don’t have a specific disease from their “list.” None of these treatments have made me better, but I’m not getting worse either.
My only (“only”) symptoms are difficulty walking and talking. And something is wrong with my eyes but I can’t explain it. It’s not quite blurry or double vision. Maybe it’s a depth perception issue. I see a new eye doctor soon, so we’ll see what he says.
I'm glad to hear that the docs haven't given up on you, Frenchfryqueen. Those treatments sound pretty heavy duty, though. Just having your eggs harvested was probably not a barrel of laughs, let alone getting chemo. I'm so sorry you're going through all of this. I am glad you're not getting worse, but walking and talking are both so critical. Do you have much support from family or friends?
I have support from family but I lost most of my friends because I couldn’t go out all the time and have fun. So I would stop going places and eventually they stopped inviting me. I’m single and I’ll probably never get married now for lots of reasons. It’s a lonely life!
That really sucks. I don't know if you have a lot of fatigue, but a lot of us don't get out much. I hope you won't give up on meeting someone someday. Maybe as you get older you can meet some more mature people than your former friends! In any case, I'm not a moderator, but this site doesn't have a requirement that you be diagnosed with MS as far as I know. I hope that you'll come back and share your concerns, etc., which probably overlap quite a bit. I wish you the best.
Ok, purely from my own experience, B12 can be deficient with any level of serum, so if you've only had a serum test it is inadequate for a number of reasons. If you are not supplementing any B vitamins, then if possible either ask for or do your own serum B12 again plus serum folate (which can even appear high in some with a B12 deficiency) and a full blood count (for things like MCV, RDW, Hb), ideally also active B12 (holotc), anti-parietal cell antibodies, anti-intrinsic factor antibodies, methylmalonic acid and homocysteine. B vitamin metabolism is complex, poorly understood (because nobody actually knows full metabolism of B12 yet), often missed or overlooked because people think it is easy to spot, and symptoms are so diverse it isn't always even looked for. If you are supplementing, the whole thing becomes even more tricky. Please don't let anyone just give you folic acid if your folate is low - with those symptoms a B12 deficiency is likely, even alongside whatever else you have going on, and taking folic before sorting the B12 could make the whole thing much worse. Always B12 first, then folic. (And always get a copy of your actual results, but I'm sure you know that.) Best wishes
Hello! I totally relate to your struggle. I went 5 years without a diagnosis and it was very frustrating. I’m curious. Did they only rely on MRI scans or did they also do a lumbar puncture to rule out MS?
They also did a lumbar puncture. Is there a bookmarker or something that would be elevated if I had MS? I totally trust my doctors, just wondering if there’s a chance MS could show up later.
MS is difficult to diagnose and it’s especially difficult because every MS patient experiences it differently and it shows up differently in different patients. To diagnose MS they basically have to eliminate all other possibilities before it’s confirmed. There have been some breakthroughs recently in diagnosing MS that may make it easier in the future but right now the final step is usually the lumbar puncture. While it’s still possible that MS could show up in the future there are several autoimmune diseases that exhibit similar symptoms like MS and the lumbar puncture often helps to eliminate them. So you can at least rest assured your doctors were thorough and doing everything they could to make the right call. Also, you are exactly right. There are bio markers in the spinal fluid that would show up in patients with MS. Here’s more info if you’re interested…
Thank you, that’s very helpful. I went back through my CSF results and found that my level of Kappa Free Light Chain is lower than that of someone with MS.
Living with any unusual or rare neurological condition which is hard to diagnose is always very difficult for any patient - especially if you can't get a firm diagnosis. However, if your MRI's have been clear and your LP was negative for oligoclonal bands then it is is very unlikely you have MS. It's even less likely if you've had two lots of specialists look at your problems and run tests to try and find out what is wrong and both have concluded that you do not have MS. If your symptoms have existed for several years and are now as bad as you describe then I can't see MS suddenly cropping up and making itself known in future tests - if it was MS it should have shown up on the tests you have had done so far.
My sympathies for all you've gone through. It's the not knowing that can drive you nuts! I had two grand mal seizures, back to back. I had an MRI and lumbar puncture (I was to out of it after the seizures to know what they were looking for), but they didn't diagnose MS. It was a number of years later that I lost feeling and mobility in my legs (and broke my arm in 4 places) when I went through the whole thing again and that time was diagnosed with MS. I guess what I'm suggesting is that FOR ME, it seems that things had to percolate more in my body before the diagnosis showed up. So, you never know!
I understand the frustration. I actually had consistent MS symptoms for 35 years before I got a diagnosis, and that was after 16 years of negative MRI's. Because of that, I don't think that MS can be completely ruled out for you at this point, just because autoimmune disorders tend to beget other AI issues.
However, I also have to agree with Frances_B that you seem to have some pretty good doctors running tests on you, and the best thing is to go with their current diagnosis and treatments. Keep documenting your symptoms and contact them if something new pops up for no apparent reason and sticks around for more than 24 hours.
Science and medicine have a come a long way over the last 50+ years, but there's still so much that is unknown about the brain and neurology.
I just saw this this morning. It's written by prominent British neurologist Gavin Giovanoni at Bart's. Essentially, he's saying it is possible to have a normal MRI and have MS. I am going to post this separately, also.
Hi, I understand your concerns and frustration. I would research how they are similar and different. Discuss questions as you learn. Make list of how SPECIALIST can offer help and another opinion. I diagnosed with MS in 2015 but from 2000-2009 I had multiple symptoms on left leg but found herniated disk and surgery in 2010. Now we say MYELOPATHY. WAS I misguided for years it was my spine? I call this gaslighting. I am always questioning but focus on today , your symptoms of both and continue on latest studies. Be well friend
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