Author Topic: AAG  (Read 130 times)

JoannaP79

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AAG
« on: November 11, 2017, 03:42:09 AM »
Does anyone here have autonomic autoimmune ganglionopathy? This can come with sjogrens apparently. As I am riddled with horrific neuropathies I've asked to be tested for the ganglionic acetylcholine receptor antibody this week. Apparently it's rare but I seriously doubt it's as rare as they say and another case of being missed.

I've formally complained to my local hospital regarding their approach to diagnosing sjogrens including failure to acknowledge seronegative presentations like mine, refusing access to lip biopsy in a timely manner and relying on the schirmers test as opposed to working collaboratively with opthamology to use more appropriate methods of testing. I've asked for the policy approach on this to be revisited and want to know what training rheumatologists are having on these issues once they have qualified. Wish me luck making a change! I have nothing to lose with them anymore
« Last Edit: November 11, 2017, 03:44:12 AM by JoannaP79 »

Nomad

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Re: AAG
« Reply #1 on: November 11, 2017, 11:42:54 AM »
Never heard of this

So sad.

But just yesterday I was think how I have a lot of odd neurologist related issues
Atypical trigeminal neuralgia
Morton' neuroma or something very similar
Very odd neuro pain in the back of my neck
Odd pelvic pain where I over react to stimulus that is something like pelvic floor dysfunction but not exactly
Migraines

My new rheumatologist mentioned a correlation between the first one I listed and Sjs
SLE, Sj.  Syndrome, IC, Atypical Trigeminal Neuralgia, ITP (low platelets)... Various meds and lots of vitamins. Trying to eat healthy; seems to help a little.

irish

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Re: AAG
« Reply #2 on: November 11, 2017, 08:20:20 PM »
When it comes to diagnosis of Sjogrens many places want positive blood work before they pursue some of the more in depth studies. The lip biopsy is something I would not even worry about anymore. Actually, many people are being treated symptomatically with plaque nil and sometimes prednisone. The blood work is something that may become positive over time and it is worth checking at least yearly to see if your blood work has converted. You may want to get a second opinion. I spend about 40 years doctoring and got diagnosed when I was 60 years old. I had a lip biopsy that was positive. I had no clue that it would be sjogrens. I was somewhat dry in mouth and lots of teeth issues, abscesses, losing teeth, saw many dentists. The most visible problems was arthritis. reflux for years and other migrating issues. All in all, it is a crap shoot. I saw a ton of doctors in many big clinics with no luck.  I always said I ewas going to keep going to the doctor til I found outo what was wrong to have put on the death certificate. One has to have a sense of humor when chronically ill. Good luck Irish