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Has anyone been diagnosed with GFAP
Autoimmune Diseases | Last Active: Apr 15 7:49pm | Replies (54)Comment receiving replies
I am so sorry you are going through this. We encountered the same confusion as you both are going through. My husband did not have all of the symptoms that yours is experiencing. His was mostly gait and sight issues at first. He was also told he probably had lymphoma and that it was hiding somewhere. That never surfaced and in the meantime was not tested for GFAP. I feel we wasted so much time trying to figure out what it was that he had.
To this day not one doctor that he has seen has ever heard of it!
I. Am always looking for more info about it and to see how people are getting on in their life, but I never seem to find anyone, so thank you for responding.
Right now just about two years into the condition he has never regained his balance fully….his legs always feel “funny” and his eyesight is not clear. We just went to see if glasses will help and they fitted him with lenses which we are waiting for.
My heart goes out to you on this journey. It’s not easy and it’s frustrating.
Stay strong. I am sure you are his advocate now as I am for my husband. ❤️
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@gardrums123
Thanks so much for your kind response and sympathy. My husband was given 5 days of IV steroids in the hospital, and literally snapped out of many of his symptoms.
Unfortunately, both the neurologist and oncologist don’t want him have no more steroids until they know for sure what he has exactly. I’m suspicious that he might have GFAP, because the screening for GFAP in his CSF came back abnormal.
Since the steroids wore off he seems to be declining.
I’ve sent in an application for an appointment to Mayo in Rochester. I hope they approve it, and we can get some intensive testing and possibly treatment. I wound be interested in hearing what medications and treatment they gave your husband. It’s so tough when the docs just say, “ we’ll do another MRI and see you in a month.”
I’m sorry to hear your husband is still having vision problems and trouble with his gait.
Have you looked into physical therapy. I requested it, and he just started this week.
I hope your husband continues to improve. I understand it can take some time.
I so appreciate your response and kind words.
Hang in there!