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.
Quote:
Originally Posted by AnnieB3
Hi. There are so many posts lately that it's making me dizzy! 
Becky, That's nice of you to say but I'm no expert. I can, however, quote some experts from a book about the striational antibodies.
Gdbyrd, Here goes. From Neuromuscular Junction Disorders by Matthew Meriggioli, James F. Howard, Jr. and C. Michel Harper:
"Antibodies to striated muscle (StrAb) were the first autoantibodies discovered in patients with MG. They are reactive with contractile elements of skeletal muscle. They are positive in 30% of all cases of adult-onset MG. They are highly associated with thymoma, being positive in 80% of MG patients with thymoma and 24% of patients with thymoma without MG. Seronegativity does not exclude thymoma, and seropositivity is not absolutely indicative of thymoma particularly in elderly patients. StrAbs are most useful as a marker of thymoma in patients with MG onse tbefore age 40. A progressive rise in StrAbs titer after resection of thymoma is a good indicator of tumor recurrence. StrAbs may be a valuable marker in middle-aged or elderly patients with mild MG, where they may be the only serologic abnormality. False positives are rare in patients without MG and/or thymoma. They sometimes occur in patients with rheumatoid arthritis who are treated with penicillamine, in 3 - 5% of patients with LES (Lambert Eaton Myasthenic Syndrome) and in recipients of bone marrow allografts with graft vs. host disease."
I guess my opinion would be: What the hell are they waiting for? The tumor to pop out of your chest and say "hello" like in Alien?! 
I would ask for them to redo the StrAbs again. I would ask for the other MG antibodies (Acetylcholine binding, blocking and modulating and the MuSk antibodies). I would ask for an EMG if they find any clinical weakness. But that's just me.
You can't always see a tumor on CT. Did you have your CT's with contrast?
How old are you? In other words, what category do you fit in with regards to the above excerpt from the book?
If I even suspected that I had a tumor, I would want it out of me before it had the chance to metastasize. But again, that's only my opinion.
Have they diagnosed you with MG?
The doctors who wrote the book I quoted are MG experts. Do you have an MG expert as a doctor?
Maybe you could get a used copy of this book. It has other great info in it.
Whatever you do is up to you and your doctors. Just don't ignore the research or your antibody levels. Are you on any drugs that could affect those levels like steroids (even steroids for asthma)?
That's about all I have, my arms are about to fall off. Good luck!
Annie |