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Old 08-13-2014, 07:05 PM #1
karenbbb karenbbb is offline
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Join Date: Aug 2014
Posts: 6
8 yr Member
karenbbb karenbbb is offline
Junior Member
 
Join Date: Aug 2014
Posts: 6
8 yr Member
Default Question about the antibody test

Hi all, I'm new here and seeking help with neurological symptoms without a diagnosis. In the last year, I've two separate "episodes" that have sent me to the doctor. Episode one happened after a cold, and it consisted of some minor numbness and tingling in my left pinky and ring finger, an overwhelming feeling of fatigue, and then nystagmus in the morning for about a month and a half (it lasted about ten minutes). Episode 2 happened about three or four months later and started with a headache in my right eye that lasted for about a week. Visual fields test was normal, so no optic neuritis. However, I started to wake up and get double vision, which I also sometimes had at night. I filmed my eyes and saw that my left eye lags when I look at something close and then at something far away, and it also turns in as well as out. Outside of those episodes, though, I have periods of ridiculous fatigue where my eyelids droop, my speech slurs, and my voice gets hoarse. I also have weakness in my neck to the point where I have to lie down to rest it. My fatigue almost always happens towards the end of the day.

I've seen several neurologists, none of which seem all that concerned with anything going on, mostly because my symptoms aren't present "all the time." However, I did get an MRI of the brain, orbits, and spinal cord, which revealed nothing abnormal. I did also see an ophthalmologist who was convinced I had Multiple Sclerosis, but also offered Myasthenia Gravis as a possibility because of the double vision and strabismus. So, at my own request, after the normal MRI, I got a test for the MG antibodies. For some reason they didn't do the MuSK test, but the antibodies test came back (apparently -- I haven't seen the actual write-up yet) as .32.

So, here are my questions. Should I pursue other tests, like the tensilon test, to see if MG is a possibility? Is the .32 a "high normal"? Should I ask to be tested again later on? Should I keep trying to find the elusive neurologist who knows what she's doing and really wants to pursue a diagnosis, or should I move on and accept that there's nothing wrong with me? I'm honestly not sure what to do at this point. I don't want to waste anyone's time, but I have a hard time there's nothing going on.
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