Pretty Cool Story About A Pots/aag Ex Baseball Player Who Had A Complete Recovery

[RichGotsPots]

http://www.utsouthwestern.edu/education/medical-school/departments/neurology/news-and-events/news/steven-vernino-aag-baseball-player-hope-diagnosis.html

[Kellysavedbygrace]

That's a great story. Rich, do you know which specific lab tests for AAG?

Also, did you know that the famous Country music legend, Roy Akuff, (Grand Old Opry- really big in the 40s and 50s) started as a pro baseball player? After fainting several times on the field he was hospitalized and disabled for a couple of years. He had Dysautonomia before they had a name for it. In his inability to perform "on the field" he began writing music and in his later years donated lots of hours to the Autonomic Dysfunction Center at Vanderbilt. He died at age 95 of CHF and has a street named in his honor nearby on music row.

[RichGotsPots]

Very cool.

Usually the antibody test is sent away to Mayo. But there are 50% that are negative and they go on the small fiber neuropathy finding along with other clinical evidence.

[looneymom]

Is there anyone on the forum who tested positive for this? I would like to know if they have recovered. This sounds like a form of POTS that gradually gets worse if not treated.

[diabeticgonewild]

I have AAG. I was diagnosed last year and I have been receiving treatment for it since then. I have received both plasmapheresis and IVIG.

It is a progressive disease, unless treatment has occurred. However, the disease is not considered to be degenerative.

I have yet to improve from prior to my decline, from when I declined prior to diagnosis one-and-a-half years ago.

OP, please note that the guy in the article did not make a full recovery. It often takes several years of treatment.

[looneymom]

Diabeticgonewild,

My son was diagnosed with POTS back in 2011 by MAYO. However, my son has not made much progress with medicines for treatment. His symptoms have progressed and am looking for more answers. Our cardiologist believes there is also more going on than just POTS. What test are used to make this diagnosis? Is it just the QSART test?

[diabeticgonewild]

Diabeticgonewild,

My son was diagnosed with POTS back in 2011 by MAYO. However, my son has not made much progress with medicines for treatment. His symptoms have progressed and am looking for more answers. Our cardiologist believes there is also more going on than just POTS. What test are used to make this diagnosis? Is it just the QSART test?

This is the test that is used for diagnosis.

http://www.mayomedicallaboratories.com/test-catalog/Overview/89904

I tested positive for the ganglionic nicotinic acetylcholine antibody, and therefore I have AAG.

[RichGotsPots]

Not everyone is positive for the AAG antibodies.. Mayo did a study on a few AAG patients and half in the study were negative for the antibodies. Also Mayo reported that IVIG or Plasma alone was not as good as a combo of meds and one of those at the same time.

AAG is like CIDP's baby brother.. Hopefully one day it will be easier to get treatment for it.

Diabetic did u get treatment at one of the 5 major hospitals in the consortium doing trials of IVIG?

[diabeticgonewild]

Not everyone is positive for the AAG antibodies.. Mayo did a study on a few AAG patients and half in the study were negative for the antibodies. Also Mayo reported that IVIG or Plasma alone was not as good as a combo of meds and one of those at the same time.

AAG is like CIDP's baby brother.. Hopefully one day it will be easier to get treatment for it.

Diabetic did u get treatment at one of the 5 major hospitals in the consortium doing trials of IVIG?

No, I do not receive treatment at one of the consortium hospitals.

I receive treatment by a neurologist in Houston. I am going to bring up the topic of being seen at Mayo at my next appointment.

Steroids or chemo is kind of risky because of my diabetes and the fact that I am more immunocompromised than the typical AAG patient.

CIDP is a demyleiniating condition. AAG is not considered to be demyleniating. The antibodies do not damage the nerves, they bind to a receptor on the nerves of the autonomic ganglia. However, they have found post-ganglionic (like autonomic neuropathy - probably autoimmune) in a case that was diagnosed 16 years after the onset of symptoms.

If I did not test positive for the antibodies, I would be in a really bad position. I already have type 1 diabetes, for 18 years, and that was what my "autonomic neuropathy" was "blamed on" before I was tested for the ganglionic nicotinic acetylcholine receptor antibody - and tested positive.