Has anyone been diagnosed with GFAP

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.

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.

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.

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! 👍🏼

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! 👍🏼

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.

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 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!