Ready or Not.

I just got done with a 3 week full evaluation at the Mayo Clinic and I finally--after 3 years of waiting and wondering--have a diagnosis and treatment plan. I feel like it may be my best shot of ever recovering. However, it's gonna be a long hard road.

I have Lambert Eaton Myasthenic Syndrome (LEMS). Odds of getting it? 1 in 4,000,000. Odds of getting it without associate lung cancer? Half of that. So, how lucky was I? I was the 1 out of 8 million people. So, to the other 7,999,999 of you out there that I saved from having LEMS, you're welcome. :)

For the next 10 months, I'm going to dose off the prednisone. And I've already stopped taking my immunosuppressant, Cellcept. After 2 months off, I can start Rituximab, which only has to be taken once a week for 4 weeks every year. However, for the next 2 months, my immune system will be allowed to run rampant. The plasmapheresis should help a little, but there's no knowing how these next 2 months are going to play out.

As far as symptomatic treatment is concerned, I'm still going to take Mestinon and add to that 3,4 Diaminopyrimide (DAP). This new medicine helps out a lot, but the side effects are highly unknown. It isn't approved by the FDA and I can only take it as part of a clinical trial. The " up" side? It's free. The "down" side? The personal side effects I've noticed are pretty intense, but I think they will become less severe over time.

Recovery will take a lot of time--we've discovered that I have some pretty severe muscle atrophy as a result of the long-term prednisone use. This contributes to the problem I have with walking. In 4 or 5 months, I should be on a low enough dose of Prednisone that muscles will no longer be affected, but then we're not sure if therapy will be effective in regaining muscle control.

It's just a whole lot of changes at once, and I'm not sure I'm ready.