Has anyone been diagnosed with GFAP (glial fibrillary acidic protein)?

Thanks for the reply and advise. I've been consistant with 8 - 10k steps a day and bike also. When I walk it feels like my hips and knees are going in 4 different directions, I use a walking stick. I'm more comfortable biking. Been more active with all the household and yard chores. Also worried about my personality. I don't know if it is the wear and tear of being sick for so long or another Gfap thing. Not the same person I was before. See Dr. Carpenter soon, Fairview, Mpls. Frustrated and worried, will talk with him.

Hey, Everyone. It's 430AM PST. I can't sleep! I am a 61-year-old dude!

I aim to share my experience and help you see that you are not alone in this extraordinarily rare medical phenomenon!

I was diagnosed with a GFAP issue 2 years ago, and we believe the cat came back! I am waiting for my spinal fluid to get tested by Mayo to confirm. I'd have inflammation in my body somewhere. A hot spot was located in my brain on an MRI, but it was inconclusive:

Can anyone identify with some of the symptoms that I have had over both episodes?:

Two Years Ago Symptoms:

1. No vision change, but my blood glucose levels surge past 350.
1.5 8 or 9 days of fevers.
2. Throwing up for 2 months, 2 times a day without fail. True !
3. Getting dizzy and falling several times.
4. No appetite.
5. Not being able to pee or defecate without Flomax pills or enemas.
6. Getting dizzy while standing.
7. No appetite and losing 50lbs.
8. Being put on 40 mg a day of steroids for about 8 weeks, making it almost impossible to get more than 4.5 hours of sleep a night.
9. Not sure if it is GFAP, but testosterone levels went below normal.
10. I felt the closest I have ever have been to being in a vegetative state. I had very little willpower to do anything. It was tough. The good part is that I don't remember a lot of it! My friends were shocked when they came to visit me. Often, I was in a trance-like state.

My wife, an ER nurse, is the one who helped with all my appointments. It took 5 months to diagnose. I did at least 75 blood draws (no exaggeration).
I am a school teacher and was on leave for about seven months.

March 2025 Symptoms

1. 18 days of fevers and night cold sweats! Yup! 18 Days!
2. Tiredness before getting back on Prednisone. I am still tired because the Prednisone won't let me take naps.
3. Not being able to pee for a few days. I didn't need Flomax.
After 4 days of tinkling urine, it cleared up on its own before starting on steroids. Crazy! I had about 2.5 weeks of diarrhea.
4. Inflammation in my liver levels, WBC count. Etc.
5. Surges of pain in my lower extremities when walking. No joint pain.
6. Losing 22 lbs in three weeks.
7. I do not feel a loss of appetite but can feel fine without eating.
8. Body aches.
9. Dizziness, but not falling or passing out.
10. I had to start injecting insulin even though I am a mild diabetic.

The second episode of whatever I have now is milder than before. If it is a result of the GFAP issue coming back, I am better off getting treatment five months sooner. I believe the antibody attacking the GFAP protein the first time was killed. Read that 20% of patients can relapse. I am off work for about five weeks. I can't teach kindergarten ( 29 years so far!) because of my lowered immunity while being on steroids. Prednisone will eventually be changed to Cellcept, which is an autoimmune preventative.

If you ever want to talk, ** I'll give you my phone number. Read that 10% of people who catch this disease are children. It's not just an older person's disease!

Take Care,

Luceman

Welcome @luceman, You will notice that we removed your email address to protect your privacy since Connect is a public forum that can be seen by anyone on the Internet. Members can use the private message function to share contact information - https://connect.mayoclinic.org/help-center/.

@gardrums123 @hassel @humphrey @msk030 and others have shared experiences on GFAP and may have some experiences or information to share with you.

Hey, Everyone. It's 430AM PST. I can't sleep! I am a 61-year-old dude!

I aim to share my experience and help you see that you are not alone in this extraordinarily rare medical phenomenon!

I was diagnosed with a GFAP issue 2 years ago, and we believe the cat came back! I am waiting for my spinal fluid to get tested by Mayo to confirm. I'd have inflammation in my body somewhere. A hot spot was located in my brain on an MRI, but it was inconclusive:

Can anyone identify with some of the symptoms that I have had over both episodes?:

Two Years Ago Symptoms:

1. No vision change, but my blood glucose levels surge past 350.
1.5 8 or 9 days of fevers.
2. Throwing up for 2 months, 2 times a day without fail. True !
3. Getting dizzy and falling several times.
4. No appetite.
5. Not being able to pee or defecate without Flomax pills or enemas.
6. Getting dizzy while standing.
7. No appetite and losing 50lbs.
8. Being put on 40 mg a day of steroids for about 8 weeks, making it almost impossible to get more than 4.5 hours of sleep a night.
9. Not sure if it is GFAP, but testosterone levels went below normal.
10. I felt the closest I have ever have been to being in a vegetative state. I had very little willpower to do anything. It was tough. The good part is that I don't remember a lot of it! My friends were shocked when they came to visit me. Often, I was in a trance-like state.

My wife, an ER nurse, is the one who helped with all my appointments. It took 5 months to diagnose. I did at least 75 blood draws (no exaggeration).
I am a school teacher and was on leave for about seven months.

March 2025 Symptoms

1. 18 days of fevers and night cold sweats! Yup! 18 Days!
2. Tiredness before getting back on Prednisone. I am still tired because the Prednisone won't let me take naps.
3. Not being able to pee for a few days. I didn't need Flomax.
After 4 days of tinkling urine, it cleared up on its own before starting on steroids. Crazy! I had about 2.5 weeks of diarrhea.
4. Inflammation in my liver levels, WBC count. Etc.
5. Surges of pain in my lower extremities when walking. No joint pain.
6. Losing 22 lbs in three weeks.
7. I do not feel a loss of appetite but can feel fine without eating.
8. Body aches.
9. Dizziness, but not falling or passing out.
10. I had to start injecting insulin even though I am a mild diabetic.

The second episode of whatever I have now is milder than before. If it is a result of the GFAP issue coming back, I am better off getting treatment five months sooner. I believe the antibody attacking the GFAP protein the first time was killed. Read that 20% of patients can relapse. I am off work for about five weeks. I can't teach kindergarten ( 29 years so far!) because of my lowered immunity while being on steroids. Prednisone will eventually be changed to Cellcept, which is an autoimmune preventative.

If you ever want to talk, ** I'll give you my phone number. Read that 10% of people who catch this disease are children. It's not just an older person's disease!

Take Care,

Luceman

I posted this same message in: Has anyone been diagnosed with GFAP to share my experience?

Hey, Everyone. It's 430AM PST. I can't sleep! I am a 61-year-old dude!

I aim to share my symptoms experience and hope you see that you are not alone in this extraordinarily rare medical phenomenon!

I was diagnosed with a GFAP issue 2 years ago, and we believe the cat came back! I am waiting for my spinal fluid to get tested by Mayo to confirm. I have inflammation in my body somewhere. A hot spot was located in my brain on an MRI, but it was inconclusive:

Can anyone identify with some of the symptoms that I have had over both episodes?:

Two Years Ago Symptoms:

1. No vision change, but my blood glucose levels surge past 350.
1.5 8 or 9 days of fevers.
2. Throwing up for 2 months, 2 times a day without fail. True !
3. Getting dizzy and falling several times.
4. No appetite.
5. Not being able to pee or defecate without Flomax pills or enemas.
6. Getting dizzy while standing.
7. No appetite and losing 50lbs.
8. Being put on 40 mg a day of steroids for about 8 weeks, making it almost impossible to get more than 4.5 hours of sleep a night.
9. Not sure if it is GFAP, but testosterone levels went below normal.
10. I felt the closest I have ever have been to being in a vegetative state. I had very little willpower to do anything. It was tough. The good news is that I don't remember a lot of it! My friends were shocked when they came to visit me. Often, I was in a trance-like state.

My wife, an ER nurse, is the one who helped with all my appointments. It took 5 months to diagnose. I did at least 75 blood draws (no exaggeration).
I am a school teacher and was on leave for about seven months.

March 2025 Symptoms

1. 18 days of fevers and night cold sweats! Yup! 18 Days!
2. Tiredness before getting back on Prednisone. I am still tired because the Prednisone won't let me take naps.
3. Not being able to pee for a few days. I didn't need Flomax.
After 4 days of tinkling urine, it cleared up on its own before starting on steroids. Crazy! I had about 2.5 weeks of diarrhea.
4. Inflammation in my liver levels, WBC count. Etc.
5. Surges of pain in my lower extremities when walking. No joint pain.
6. Losing 22 lbs in three weeks.
7. I do not feel a loss of appetite but can feel fine without eating.
8. Body aches.
9. Dizziness, but not falling or passing out.
10. I had to start injecting insulin even though I am a mild diabetic.

The second episode of whatever I have now is milder than before. If it is a result of the GFAP issue coming back, I am better off getting treatment five months sooner. I believe the antibody attacking the GFAP protein the first time was killed. Read that 20% of patients can relapse. I am off work for about five weeks. I can't teach kindergarten ( 29 years so far!) because of my lowered immunity while being on steroids. Prednisone will eventually be changed to Cellcept, which is an autoimmune preventative.

If you ever want to talk, ** I'll give you my phone number. Read that 10% of people who catch this disease are children. It's not just an older person's disease!

Take Care,

Luceman

Hey, Everyone. It's 430AM PST. I can't sleep! I am a 61-year-old dude!

I aim to share my experience and help you see that you are not alone in this extraordinarily rare medical phenomenon!

I was diagnosed with a GFAP issue 2 years ago, and we believe the cat came back! I am waiting for my spinal fluid to get tested by Mayo to confirm. I'd have inflammation in my body somewhere. A hot spot was located in my brain on an MRI, but it was inconclusive:

Can anyone identify with some of the symptoms that I have had over both episodes?:

Two Years Ago Symptoms:

1. No vision change, but my blood glucose levels surge past 350.
1.5 8 or 9 days of fevers.
2. Throwing up for 2 months, 2 times a day without fail. True !
3. Getting dizzy and falling several times.
4. No appetite.
5. Not being able to pee or defecate without Flomax pills or enemas.
6. Getting dizzy while standing.
7. No appetite and losing 50lbs.
8. Being put on 40 mg a day of steroids for about 8 weeks, making it almost impossible to get more than 4.5 hours of sleep a night.
9. Not sure if it is GFAP, but testosterone levels went below normal.
10. I felt the closest I have ever have been to being in a vegetative state. I had very little willpower to do anything. It was tough. The good part is that I don't remember a lot of it! My friends were shocked when they came to visit me. Often, I was in a trance-like state.

My wife, an ER nurse, is the one who helped with all my appointments. It took 5 months to diagnose. I did at least 75 blood draws (no exaggeration).
I am a school teacher and was on leave for about seven months.

March 2025 Symptoms

1. 18 days of fevers and night cold sweats! Yup! 18 Days!
2. Tiredness before getting back on Prednisone. I am still tired because the Prednisone won't let me take naps.
3. Not being able to pee for a few days. I didn't need Flomax.
After 4 days of tinkling urine, it cleared up on its own before starting on steroids. Crazy! I had about 2.5 weeks of diarrhea.
4. Inflammation in my liver levels, WBC count. Etc.
5. Surges of pain in my lower extremities when walking. No joint pain.
6. Losing 22 lbs in three weeks.
7. I do not feel a loss of appetite but can feel fine without eating.
8. Body aches.
9. Dizziness, but not falling or passing out.
10. I had to start injecting insulin even though I am a mild diabetic.

The second episode of whatever I have now is milder than before. If it is a result of the GFAP issue coming back, I am better off getting treatment five months sooner. I believe the antibody attacking the GFAP protein the first time was killed. Read that 20% of patients can relapse. I am off work for about five weeks. I can't teach kindergarten ( 29 years so far!) because of my lowered immunity while being on steroids. Prednisone will eventually be changed to Cellcept, which is an autoimmune preventative.

If you ever want to talk, ** I'll give you my phone number. Read that 10% of people who catch this disease are children. It's not just an older person's disease!

Take Care,

Luceman

As an addendum, I forgot that one of the symptoms that I have had in both cases is an elevated heart rate for a few weeks during each episode of 100+bpm. After I started steroids, this passed. I do not have high blood pressure. Also, the first time I got diagnosed, I weighed 245 lbs. Presently, I have dropped from 230 lbs to 210 lbs.

Hey, Everyone. It's 430AM PST. I can't sleep! I am a 61-year-old dude!

I aim to share my experience and help you see that you are not alone in this extraordinarily rare medical phenomenon!

I was diagnosed with a GFAP issue 2 years ago, and we believe the cat came back! I am waiting for my spinal fluid to get tested by Mayo to confirm. I'd have inflammation in my body somewhere. A hot spot was located in my brain on an MRI, but it was inconclusive:

Can anyone identify with some of the symptoms that I have had over both episodes?:

Two Years Ago Symptoms:

1. No vision change, but my blood glucose levels surge past 350.
1.5 8 or 9 days of fevers.
2. Throwing up for 2 months, 2 times a day without fail. True !
3. Getting dizzy and falling several times.
4. No appetite.
5. Not being able to pee or defecate without Flomax pills or enemas.
6. Getting dizzy while standing.
7. No appetite and losing 50lbs.
8. Being put on 40 mg a day of steroids for about 8 weeks, making it almost impossible to get more than 4.5 hours of sleep a night.
9. Not sure if it is GFAP, but testosterone levels went below normal.
10. I felt the closest I have ever have been to being in a vegetative state. I had very little willpower to do anything. It was tough. The good part is that I don't remember a lot of it! My friends were shocked when they came to visit me. Often, I was in a trance-like state.

My wife, an ER nurse, is the one who helped with all my appointments. It took 5 months to diagnose. I did at least 75 blood draws (no exaggeration).
I am a school teacher and was on leave for about seven months.

March 2025 Symptoms

1. 18 days of fevers and night cold sweats! Yup! 18 Days!
2. Tiredness before getting back on Prednisone. I am still tired because the Prednisone won't let me take naps.
3. Not being able to pee for a few days. I didn't need Flomax.
After 4 days of tinkling urine, it cleared up on its own before starting on steroids. Crazy! I had about 2.5 weeks of diarrhea.
4. Inflammation in my liver levels, WBC count. Etc.
5. Surges of pain in my lower extremities when walking. No joint pain.
6. Losing 22 lbs in three weeks.
7. I do not feel a loss of appetite but can feel fine without eating.
8. Body aches.
9. Dizziness, but not falling or passing out.
10. I had to start injecting insulin even though I am a mild diabetic.

The second episode of whatever I have now is milder than before. If it is a result of the GFAP issue coming back, I am better off getting treatment five months sooner. I believe the antibody attacking the GFAP protein the first time was killed. Read that 20% of patients can relapse. I am off work for about five weeks. I can't teach kindergarten ( 29 years so far!) because of my lowered immunity while being on steroids. Prednisone will eventually be changed to Cellcept, which is an autoimmune preventative.

If you ever want to talk, ** I'll give you my phone number. Read that 10% of people who catch this disease are children. It's not just an older person's disease!

Take Care,

Luceman