View Single Post
Old 09-29-2010, 03:08 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
Default

That's a good article, Jana. ALS is a very scary potential diagnosis, so it's good to know the differences if you are facing down that or MG.

What a couple of MG experts told me, and what I've read, about the modulating only antibody results is that there are very few false positives, especially when done by reputable labs. And when a patient has a classic MG clinical presentation, plus other tests that back up the diagnosis and breathing testing that shows neuromuscular weakness, it's a done deal. They are finding that this antibody issue is far more complex than they thought. It's not some easy algorithm. There are going to be more MG antibodies, I would bet my Mestinon on that. And for people on other drugs like Advair or Flovent that are or contain steroids, antibody tests are not going to be highly accurate. If you have any kind of IgG subclass deficiency, the tests could be falsely negative too.

I know doctors like to be careful but some of them take it to an extreme.

Mike, I like the way your wife thinks! Don't be too eager for Pred, though. I know that DV is a tough symptom but Pred can be much tougher. It affects so many body systems and can wreak havoc on your health, from increased infections, to brittle bones, imbalance of hormones, reduction of the gel coating of the stomach, diabetes and the list goes on and on. If you have any history of cancer in your family, you need to be cautious too. Any immunosuppressant can leave you open for cancer.

Read a LOT. Get as many of your questions answered. If you can afford to, it might be worthwhile to at least travel a little to consult with an MG expert. Neuros have this tendency to dig their feet in once they say something, even if the don't have all the knowledge on a topic like MG.

And I think your wife was spot on about the overlap in drugs from Timespan to Mestinon. Timespan can be useful but some MG experts find it to be too "iffy" in dosing amounts overnight for those who are on higher Mestinon doses or who are more unstable. That's why you need an MG expert neurologist to talk over all of this with.

I hope you will do some more reading, like at www.myasthenia.org and that you can figure out what treatments would be best for you.

Annie
AnnieB3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
pingpongman (09-30-2010)