1. < Autoimmune Diseases

Has anyone been diagnosed with GFAP

Posted by gardrums123 @gardrums123, May 26, 2023

My husband has been diagnosed with a rare autoimmune disease called autoimmune glial fibrillary acidic protein astrocytopathy.
Has anyone been diagnosed with this. Looking to know what we may have ahead of us.

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degarden_girl | @degarden_girl | Apr 14 8:11am
In reply to @gardrums123 "I’m so sorry you are so young with this diagnosis, but your attitude is wonderful! My..." + (show)
@gardrums123

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! 👍🏼

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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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gardrums123 | @gardrums123 | Apr 14 11:35am
In reply to @degarden_girl "I have RLS (and Periodic Involuntary Limb Movement). I have found it is usually controlled by..." + (show)
@degarden_girl

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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Thank you so much I will look into this as well.
Be well. 😊

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1kay2 | @1kay2 | Apr 15 4:00pm
In reply to @slkanowitz "Restless leg syndrome occurs in many different conditions and can be very problematic for both patient..." + (show)
@slkanowitz

Restless leg syndrome occurs in many different conditions and can be very problematic for both patient and spouse if sleep deprivation ensues. The Restless Leg Foundation.org is very helpful and your neurologist can prescribe medication to relieve the symptoms if needed. It occurs in many chronic neurological conditions and is very common. Be sure your neurologist is aware of your symptoms so he/she can help with that.

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hi, rls is terrible. It comes with my FM and it took years and terrible effects from medication. I found a walk around the house, too cold outside, and calf stretches have been so very helpful.
I hope this is helpful to you.

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gardrums123 | @gardrums123 | Apr 15 7:49pm
In reply to @1kay2 "hi, rls is terrible. It comes with my FM and it took years and terrible effects..." + (show)
@1kay2

hi, rls is terrible. It comes with my FM and it took years and terrible effects from medication. I found a walk around the house, too cold outside, and calf stretches have been so very helpful.
I hope this is helpful to you.

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I’m so sorry for your suffering. We try at all costs to not use meds. Thank you for your suggestion! 😊

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