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Old 05-22-2009, 06:48 AM #11
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Talking about feeling old, I live in a group of 9 units, everyone here is over 60, except me I'm 37. It still makes me feel a bit inadequate when my 90 year old neighbour walks briskly about the place(I get on wonderfully well with all the ladies here, they have taken me under there wings, most of them horrified at how limited my life is)
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Old 05-24-2009, 12:37 AM #12
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Yikes! MusK antibody test cost $400??.....I just had one drawn on May 5th...results are still pending...lab sent it to mayo. I hope my insurance covers it! All of my antibodies have been normal except for thyroid AB...which was extremely high...thyroid test showed normal thyroid, no nodes,etc...thyroid uptake showed mild hyperthyroidism...but all TSH,T4,T3 all within normal limits.

Neuro said at last visit after seeing my thyroid antibiodies so high......that musK antibiodies needed to be drawn...I was diagnosed just by my clinical symptoms (double vision, left droopy eye, weakness and trouble walking in the evenings) and response to mestinon...since EMG normal, antibody test normal, normal CT, and normal MRI

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Originally Posted by Gdbyrd View Post
Thanks for responding! OK. I'll start filling in the questions.

Both CT's were with contrast. They showed no change between the two tests(they were 8 months apart). My neuro had mentioned that she wanted to continue doing CT's every 6-12 months if my levels continued to riise....to which point I would almost glow in the dark :P

My first two antibody tests(spread 3 months apart) were wide spectrum. What exactly I can't remember. I was told that a musk test was going to be a lot of money out of pocket as my insurance wouldn't cover it...I never looked into it personally, as is I pay 400$ every 3-6 months for labs. All results aside from the striational antibodies and ANA were normal.

My only continuing symptom is binocular diplopia in extreme upper gaze(cover one eye it goes away).

I am a whopping 25 years old. Sigh. I know this is awful of me to say, but damn I feel old sometimes. I was "diagnosed" in Feb of last year.
I take NO other medications.

Thank you very much for taking the time to type all that out, I really, really do appreciate it.
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