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Old 04-20-2012, 07:15 AM
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
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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
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"Thanks for this!" says:
Agirlandhertort1 (04-20-2012)