Lesions on the brain and autoimmune disease

My mother has MS and was told she has over a hundred lesions by her neurologist and she's 65. She is still in stage 1 of MS. This doesn't seem right and that is why we are seeing a neurologist at Mayo in August. I have tried to find studies or any information on similar cases and I have found nothing.

Have you been tested for GFAP? Autoimmune Glial Acidic Protein Astrocytopathy. It’s a very rare autoimmune disease that only the Mayo Clinic has info on.

No I have not been tested for that well as far as I know at least ha. I have had 2 mri, alot of blood work and 1 xray. I am now seeing a rheumatologist due to my symptoms of joint pain, fatigue, vertigo, some days it's hard to walk and thinning of my hair. Neurologist did not think it was MS due to blood work and mri but didn't rule it out completely. She did not think my condition is nero but more rheumatoid so she referred me. I will have to do some research on GFAP.

I'm sorry your going through that with your mother. It is very frustrating. My nero was about 90% sure what I have is not MS but more rheumatoid so now I am seeing them but at there appointment they looked just as confused. So I definitely get the frustration. I hope yall have more relief with the mayo clinic!

My husband also had lesions. He started with an unsteady gait and double vision which is what MS can present. At first they said it was lymphoma hiding somewhere and aggressively pursued that. It turned out that was not the case. They sent him home from the hospital after numerous MRIs, a brain biopsy and several lumbar punctures. They kept insisting it was between MS and Lymphoma. They said the lesions he had did not coincide with how MS presents lesions so they were very confused.
In November he had a relapse where he couldn’t walk at all. He went to Mt. Sinai in NYC where they again did numerous MRIs and blood and spinal taps. They sent all of the fluids to Mayo and they diagnosed it as GFAP.
He was put on high steroid treatment and anti rejection med and is now tapering them. They don’t know much at all about his disease, so we don’t know what the outcome will be when he is totally off the steroids.
I hope for your sake you won’t end up with this. Good luck to .

May I ask did he ever have bad joint pain or a flu like feeling? The neurologist said the same thing about my scan as well, that my lesions are not a normal pattern for ms. She did do blood work and said my ANA were positive and it was speckled pattern and based off that blood test right there she said that's why she thinks it's rheumatoid.

No, he never had any flu like symptoms but if you can pull up some info on GFAP I remember reading something about flu symptoms and also infections. He mostly had the gait problem and double vision. They told him MS doesn’t show several lesions that show up the same time, which is what he showed . MS usually shows one lesion at a time at different times which causes what they call a flare up.

I see. Thank you for answering my question. I hope his symptoms stay improving and good luck to both of you : )

Thank you. But definitely check out GFAP. You need to eliminate all possibilities. 😀

To Bwalker433: Your description caught my eye as it reminded me of a dear friend who was living rurally and went to the Mayo Clinic too late for them to help her. She was in her 60s and not very robust. I would suggest that you contact them at least by email and see if they will at least give you a direction to go. But please don't wait. Our thoughts are with you.