Bloodwork Results
 

They finally came back, and I tested negative. The results were:

ACETYLCHOL BIND AB 0.3
ACETYLCHOLINE BLK AB 0

I know that the false negative rate is fairly high (I know 2 people personally who tested negative, then positive later) but I know this also gives my neuro more "leverage" in stating that I'm nuts. I'm trying to come to terms with the reality that they may never figure out what's wrong with me, but it's quite depressing.

Every time my eye droops, I am humiliated, and I feel like I've lost control of my body. I would love to not have MG, but I would also love to not have that pesky eye droop or unsteady gait. I just want answers, and the longer this goes on, the more I question my sanity. I'm so confused.

I'm so sorry. I've been through what you're describing. When I got my negative test results, I was crushed, for the reasons you describe. I also hit a point where my neurologist basically was done with me. He couldn't diagnose me, and couldn't think of anything else to test me for. I felt like I could face almost any diagnosis--what I couldn't face was being sick and not knowing why and having people doubt the reality of my illness.

I eventually got diagnosed. My doctor eventually sent me to another neurologist. I had to travel about an hour to Boston. The first doctor was willing to just let things be until I came in and said, I really need to pursue this--this is really interfering with my life. I need to do something.

Please don't give up. Can you see an neuro-ophthalmologist, or even a regular ophthalmologist (eye doctor)? A lot of us here were diagnosed by eye specialists when a regular neurologist couldn't help us. You have real, observable symptoms. It's not "in your head," and depression doesn't cause eyelid droop.

There are more tests you need. The AChR antibodies you've been tested for are only one kind of antibodies that can cause myasthenic syndromes. There's also MuSK and LEMS, which are commonly tested for, and others. And you're right--we have lots of people on this list who have never tested positive for anything (I've been tested three times for the AChR antibodies). Many of us are diagnosed on the basis of a single-fiber EMG (and I had three of those before the doctors were convinced).

Abby

Try and stay positive, getting yourself upset over your drooping eye can only make MG worse. The markers in my blood test never came up positive until my MG got quite severe and then only one marker was slightly positive. An eye specialist did an ice test and confirmed the MG. Find yourself a neurologist who is a specialist for the disease as most general neurologist have limited experience with MG or other related rare neuromuscular diseases. I am on my third Dr. and finally found one who has other MG patients and seems to understand the crazy swings the MG takes. Wish you the best.
Al

I agree with the other posters here. Don't let it get you down. That blood test is only for one of the several anti-bodies that can cause MG. All a positive result on that antibody test does is give a positive diagnosis. A negative result does not rule out MG as a possible diagnosis. Don't let your doctors stop testing until they can tell you what you do have and how to treat it.

Brian

Thanks everybody. I'm glad you all understand that I don't WANT to have a disease, but I desperately need to know what's wrong with me. I need to try and stay positive, at least until I visit the new neuro (which will make number 4).

The first neuro dropped me after my stroke dx (I think he was scared of legal action), the hospital neuro doesn't take my insurance, the neuro I see now is the one who keeps pushing psych meds.

I don't take them, but that's because I feel like it's a cop out. Almost like he wants me to be so zombied out that I ignore my health. Plus, the only thing making me depressed is the lack of diagnosis.

:grouphug: You all don't know how much I needed these kind words today!