Follow Up Appt. Neuropathy

[HopeSprings]

So it wasn't all that enlightening. He said when sensory fibers are affected, usually autonomic ones are too. He said past Valsalva test results also point to autonomic neuropathy. He's still focused on trying to find out what's causing the nerve death (is death the right word?). I assume if there are less nerve fibers than there should be - that they died? Report says: mild "perifollicular inflammation" and "peri-vascular inflammation" and then says "A non length dependent pattern of denervation is demonstrated in ENF densities of the distal and proximal thigh skins. Similar pattern of denervation could be seen in ganglionopathy or in conditions with multifocal involvement of sensory nerve." The Dr. is testing again for Antiganglionic Antibody (AChR) - it was negative before- Sulfatide (forget what thats for) and some rare genetic form of Amyloidosis. I read that a "non length dependent" pattern points in the direction of a possible autoimmune cause like Sjogrens or is the result of an infection like Lyme. I also read it's more likely a "ganglionopathy" than a "neuropathy" - not totally clear on what that means. The wild goose chase continues. As always, if anyone knows anything, please share.

Naomi

[sue1234]

I have no clue what all that means, but I love to see all these puzzle pieces posted. Maybe someday, someone with medical knowledge might be able to see a pattern in everyone.

[HopeSprings]

Sue, this might be a "no, duh"... but I showed him that 4 hour GTT - (the one where blood sugar didn't rise) and he thought it was very peculiar and probably related to autonomic malfunction.

[lgtaylor100]

Naomi - Who is the doctor who did the AChR. I've asked for that test and I was told that it was not commercially available. Is this the neurologist In NY. Please let me know his/her name.

Thanks,

Lynne

[juliegee]

I have nothing intelligent to add , but like Sue- I LOVE seeing you figure it out. Gives a gal like me hope Keep up your perseverance & keep asking questions. You're helping us all.

Thanks for sharing!

[HopeSprings]

Lynne - it's Dr. Louis Weimer at Columbia Presbyterian, but my primary care Dr. was also able to order it last year. I think this is the one that would cause "Autoimmune POTS." The test is definitely available.

[potsgirl]

Naomi,

I also get tested for amyloidosis. So far, nothing has shown up, thank God. It's very hard to find, from what I hear. I've had a couple of fat pad biopsies done on my abdomen (I keep telling them to take it from my thighs - there's more fat there!), and I'm probably due for another check soon. Why do they think you might have it? How are they testing you?

[HopeSprings]

I dunno why he is thinking amyloidosis. Maybe the POTS/neuropathy combo is enough to suspect it? He did some blood tests related to this (i forget what) and wants me to get one that looks for a genetic form - test is called TTR Mutation test. I highly highly doubt this is what I have - but can't hurt to look. This whole thing is just driving me crazy - I feel like it's impossible to get to a final answer.

[corina]

naomi, i'm sorry your appointment wasn't what you'd hoped for. i do admire the way you keep searching for answers, just thought i'd let you know

corina

[HopeSprings]

Thank you, Corina.

[lgtaylor100]

Naomi - I sent you a PM about Dr. Weimar. No rush. I just wanted to make sure that you saw it because the lay out is quite different.

Thanks,

Lynne

[HopeSprings]

You're right, I wouldn't have seen it. On the old format, I would get an e-mail alert about PM's. Maybe I need to set notifications. Will look at your message now.

[lgtaylor100]

I just went through my labs and saw an AChR for Myasthenia Gravis. Does anyone know if the antiganglionic autoantibody which I thought was for autoimmune dysautonomia is the same thing or something different. I think they would be different tests but the AChR part is throwing me.

[HopeSprings]

Lynne: My prescription says specifically "anti-ganglionic AChR Antibody." I understand your confusion and I'm trying to figure it out. I think with Myasthenia Gravis, it's just anti-AChR Antibody (no ganglionic) and targets muscle, whereas the other one targets nerves. See if this info helps at all. If I'm wrong let me know because I'm curious too.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC490626/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2536520/

http://jnnp.bmj.com/content/81/5/586.short

[lgtaylor100]

Thanks for the articles Naomi.They are very helpful. It appears that they are separate tests. I assume that you had the gangionic AChR. Do you know what lab processed it when you had it done by your PCP?

[HopeSprings]

Lynne - this is unbelievable. I have to thank you! Your question prompted me to look at my lab work and guess what? They did the WRONG test. I cannot believe my Dr. didn't notice. My labwork results says AChR Binding Abs (the Myasthenia test) - my prescription said the ganglionic thing. I called LabCorp and they confirmed they made a mistake! I'm pretty sure I just repeated this test at the lab at Columbia, but sounds like LabCorp does the test because she said they are going to call me to come in and get the right test done. I can't find the one from a few years ago - I don't remember, but I think it ended up at Mayo - even my recent prescription says "Mayo" in parentheses. So I'm unclear if you can get drawn at any lab and they send it to Mayo, or if regular labs are now doing the test. Just in case, see below from Dinet:

Researchers have discovered an antibody to neuronal nicotinic acetylcholine receptors of autonomic ganglia (Vernino, Low, Fealey, Stewart, Farrugia & Lennon, 2000). Some people with POTS have an antibody titer test that is positive to this antibody. Patients with orthostatic intolerance, anhidrosis, constipation, urinary dysfunction, sicca syndrome and pupillary dysfunction had higher antibody titers than subjects that did not (Gibbons & Freeman, 2009). Patients with the highest levels of these ganglionic-receptor-binding antibodies have the most severe autonomic dysfunction. Physicians have discovered that antibody levels lower as some patients improve, which suggests a cause and effect relationship. Patients interested in being tested for the ganglionic antibody should have their physician contact:

Mayo Medical Laboratories

1-800-533-1710

mml@mayo.edu

[lgtaylor100]

Here is a link from Mayo about autoimmune dysautonomia and all of the labs that are used to diagnose it. What is encouraging is that there is a treatment immuotherapy or plasmarpherisis that has been successful.

http://www.mayomedicallaboratories.com/articles/hottopics/transcripts/2011/02-auto-dys-eval/02.html

Naomi and others with sicca syndrome, note that this is a symptom of autoimmune dysautonomia. This may explain why I have sicca syndrome but not Sjogren's. I wonder if these tests can be done locally and sent to Mayo.

If anyone knows anything about this or has been tested for it, please chime in.

This sounds like it may be promising.

[HopeSprings]

Lynne - I found those old Mayo labs from 2007. I didn't realize it, but my Dr. ordered the entire dysautonomia panel - all negative. Looks like I got the prescription from my PCP, had blood drawn at a local hospital, blood was sent to Mayo and results were sent back to my Dr. I don't remember doing all that, but I guess I did! So we'll see if anything has changed with at least that one test. I think it's definitely worth bringing that Mayo description to your Dr. and asking how to get it done. And how come all dysautonomia people aren't screened for these things?

[Yolaclover]

thanks Naomi, always like to hear about NYC docs

Clove

[L4UR3N]

I just got this test sent off and am awaiting results. My doctor said that it is only done by the mayo clinic, so my lab had to send it there. You can help your lab out (if they seem hesitant to send your blood work off) by going to www.mayomedicallaboratories.com , looking up the test and printing out the directions for proper handling of the specimen and shipping info. My lab was very resistant until I gave them step by step directions. Hopefully this helps!

Waiting is the hardest part!!!