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Has anyone been diagnosed with GFAP
Autoimmune Diseases | Last Active: Oct 26 3:57pm | Replies (61)Comment receiving replies
I’m so sorry you are so young with this diagnosis, but your attitude is wonderful! My husband is 74 and he is finding it hard to accept. He knows he is lucky that he is on his feet even though his balance is so off and deals with other minor things. I think you could knock him over with a feather sometimes!
He just had a recent MRI and everything has stayed the same. So no change in over a year. Which is a good thing.
His spine is a mess and we are thinking that might have a lot to do with his walking too.
The restless legs just started a couple of months ago so that is confusing. Our doctor did give him meds for it, but we are trying very hard not to add meds to his condition. Maybe we will have to cave and let him try it.
Thanks for your reply. We all need to hear other stories as this is seemingly so rare you don’t have much to compare with others.
Stay positive …you are a good influence for others dealing with this! 👍🏼
Replies to "I’m so sorry you are so young with this diagnosis, but your attitude is wonderful! My..."
I was seeing a GFAP specialist is Aurora, Colorado...at UCHEALTH hospital..Dr. Amanda Piquette.
She has studied this disease and is very good.
Just thought I would share!!
I have RLS (and Periodic Involuntary Limb Movement). I have found it is usually controlled by a dose of 2000 IU of Vit D3. I started at 4000 IUs and reduced until I found the 2000 IUs worked fine most of the time (and when it doesn't I take 100mg of Gabapentin). It might be worth trying instead of a prescription med. Might work, might not but no harm in trying. I wish your husband good luck. This is a miserable syndrome.
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I understand his state! Its a horible ordeal to have your body become full of limitations. I decided to stay off of any medicine as when I was on them, I suppord from symptoms from the medicine amd for me it wasnt worth it but it may be for him. I only recieve the rituximab every 6 months and MRIs to keep it in check. As long as the b1 and b2 cell count is 0, GFAP biomarkers should play nice.