Test results
 

Hey everyone,

I'm so confused about some test results that I received about a month ago. I have an appt with a neurologist in a few days, but can anyone help me out between now and then before I drive myself crazy?!

I was recently diagnosed with a connective tissue disorder and POTS.. and to make sure nothing else was going on, I had some blood work done.. including the test for ganglioside antibodies which are 'associated with diverse peripheral neuropathies.' The dr who ran these tests specializes in POTS, neuropathy, etc. Anyways, my test result came back with a strong positive for GD1A, which is associated with GBS, 'particularly acute motor axonal neuropathy.'

As far as any nerve-related symptoms go, the only thing I can possibly think of is that I sometimes get twitching on my lips or eyes, or my toes occasionally. I had this weird thing this summer where the right side of my neck felt slightly numb, and after I got sick with a cold a few months ago and took a nap, one of my legs felt slightly numb for a little bit. I sometimes have some urine leakage, but I've been told it's related to my other issues. My left leg is weak and shakes a bit when I try to stand without locking my knees, and my rheumatologist told me to see a neurologist because of this. BUT, another dr said this happens because my knees are hypermobile (related to the connective tissue disorder), so I can't stand normally. The only thing I can think of that's nerve-related that I get consistently is tingly feet when I first wake up in the morning.

So... what can the GD1A test result mean for me? I've talked to so many different drs about this, and they're all scratching their heads. Some of them said to disregard the results. I don't know if this means I HAVE something, or if I once had a very, very mild form of GBS, or if I have something that's dormant and could come about at any time?

I had a nerve conduction study done BEFORE these results, and it came back normal. I had an MRI done this summer because of my neck, and it was normal except for some small lesion-like areas that they said are due to my chronic migraines.

They're doing the nerve conduction study again on Thursday, plus an EMG.

Can anyone help?!

Hi cwilson1987

Welcome to NeuroTalk :).

Elevated levels of anti-GD1a antibodies are a common diagnostic sign of GBS - you might find this general information about GBS helpful when talking with your doctors; http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm.

Acute motor axonal neuropathy is a subclass of GBS. Anti-GD1a antibodies are quite common in it as are antibodies specific for a bacterium (Campylobacter jejuni) - the latter is something that you could get your health care team to check out.

All the best.