Ganglioside Testing

[Ctat333]

Is anyone here familiar with the ganglioside panel test? That was one of many blood tests that my doctor ordered for me. I got a call last night from my doctor's office because of some abnormal results (go figure haha...)

One of the abnormalities was my ganglioside test. All I was told was that it came back "abnormal" and that was level was 55, and that this confirms neuropathy. I have been researching this for hours, but I'm still having a hard time understanding what this means. Can anyone here explain what this panel tests for, and what an abnormal result means? Is this releated to my POTS and EDS, or is this a new can of worms? I don't meet with my doctor again until June 12, and I will for sure get more clarification then, but for now, I would at least like to understand the test a bit more!

Thank you in advance, and sorry if my question is confusing lol.

Gentle Hugs,

~ Alison ~

[dkd]

I don't know anything about this test, but the other day I found a piece of paper that I had scribbled down some notes on and one of them was 'ganglioside antibody test'. I guess I read somewhere that it could be a useful test???

Please let us know when you find out what it means. I hope it's a useful piece of your puzzle.

[Ctat333]

When I find out more, I definitely will. I don't know if this is POTS related, EDS related (I have that too lol), or if this is something totally separate. From my reading, I've gathered that this these antibodies are produced in response to some auto immune diseases (Gullain Barr Syndrome, CIDP, Multifocal Motor Neuropathy, etc.) What keeps throwing me off though, is that some studies I've read have said that some patients with connective tissue diseases can produce these antobodies, but it seems like the authors are referring to autoimmune connective tissue diseases, like lupus, sjordens, RA, etc. I don't think Ehlers Danlos would be included in that group, as it's an inheritable condition, and not auto immune related.

This is where I'm stuck. I know I have neuropathy, and it seems like my positive ganglioside test confirms this (still waiting on NCV test results too). But it's what is causing the neuropathy. I don't think my doctor will explain the test results over the phone, and I don't think I can wait 2 more weeks until my next appt to find out lol! When I found out the test results, it was because one of the nurses was calling me about my Vitamin D levels, which were extremely low. I asked about the rest of my blood work, because. I didn't have the results yet, and she read the rest of the report to me. I'm not sure if she was really supposed to do that... Grrr, I hate waiting!!