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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

johnhester | @johnhester | Apr 12 2:34pm
In reply to @joe1977 "Hello! I was diagnosed back in Sep 2022. I have been living with this disease and..." + (show)
@joe1977

Hello! I was diagnosed back in Sep 2022. I have been living with this disease and dealing with all of its symptons since then. Its a daily tasks and it can be difficult to cope with both physically and mentally! I am now 46 years old and have accepted that this is the new way of life.

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I hope you can find some things to lift your spirit. I know the journey is rough. Wishing you the best.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 12 8:52pm
In reply to @joe1977 "Hello! I was diagnosed back in Sep 2022. I have been living with this disease and..." + (show)
@joe1977

Hello! I was diagnosed back in Sep 2022. I have been living with this disease and dealing with all of its symptons since then. Its a daily tasks and it can be difficult to cope with both physically and mentally! I am now 46 years old and have accepted that this is the new way of life.

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@joe1977, Welcome to Mayo Clinic Connect! I’m glad you found this site and discussion. And I love the positive attitude that you have! Thank you.
Do you have any concerns or questions about GFAP that members may be able to answer?

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slkanowitz | @slkanowitz | Apr 13 4:50pm

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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2 replies
gardrums123 | @gardrums123 | Apr 13 5:11pm
In reply to @joe1977 "Hello! I was diagnosed back in Sep 2022. I have been living with this disease and..." + (show)
@joe1977

Hello! I was diagnosed back in Sep 2022. I have been living with this disease and dealing with all of its symptons since then. Its a daily tasks and it can be difficult to cope with both physically and mentally! I am now 46 years old and have accepted that this is the new way of life.

Jump to this post

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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3 replies
joe1977 | @joe1977 | Apr 13 8:47pm
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 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.

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joe1977 | @joe1977 | Apr 13 8:50pm
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! 👍🏼

Jump to this post

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!!

REPLY
1 reply
joe1977 | @joe1977 | Apr 13 8:51pm
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.

Jump to this post

Hello! Are you aware of any natural remedies for Restless Legs...that actually work.

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slkanowitz | @slkanowitz | Apr 13 9:47pm

I do think calcium and magnesium supplements help as they have a sedative effect on the nerves and muscles. Also avoiding alcohol in the evening and stimulants like caffeine. A heating pad and elevation (putting legs up on a couple of pillows) and pressure on the legs (a weighted blanket or compression socks). Massage helps, and some people use magnesium oil rubbed on legs. I have tried all those things and they help but I have to take medication or it’s unbearable. Iron deficiency can make it worse. Your Dr can check a ferritin level in serum (stored iron) and if under 75, iron supplements will help. I hope you get some relief!

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1 reply
gardrums123 | @gardrums123 | Apr 14 6:04am
In reply to @joe1977 "I was seeing a GFAP specialist is Aurora, Colorado...at UCHEALTH hospital..Dr. Amanda Piquette. She has studied..." + (show)
@joe1977

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!!

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Thanks. We are in NY and are working with Mt. Sinai. Not one neurologist there has a case besides his doctor!

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gardrums123 | @gardrums123 | Apr 14 6:05am
In reply to @slkanowitz "I do think calcium and magnesium supplements help as they have a sedative effect on the..." + (show)
@slkanowitz

I do think calcium and magnesium supplements help as they have a sedative effect on the nerves and muscles. Also avoiding alcohol in the evening and stimulants like caffeine. A heating pad and elevation (putting legs up on a couple of pillows) and pressure on the legs (a weighted blanket or compression socks). Massage helps, and some people use magnesium oil rubbed on legs. I have tried all those things and they help but I have to take medication or it’s unbearable. Iron deficiency can make it worse. Your Dr can check a ferritin level in serum (stored iron) and if under 75, iron supplements will help. I hope you get some relief!

Jump to this post

Thank you. We will take all of this into consideration!

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