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.

Mayo Days 3-8

Tests. Consultations. Lots of sitting, waiting.

I apologize for not keeping the blog very updated. It didn't take long to get weary and worn down. After a few days, I began napping in the afternoons and sleeping longer nights, so I wasn't on the internet much.

So far, no real conclusions have been drawn...I am slightly anemic (which can be fixed by taking a supplement for about 3 month) and I need a little more Vitamin D. These are not big things, so we haven't found any real answers yet.

I am meeting with a new doctor tomorrow...his specialty is neuroimmunology. I have to wonder, since this problem is obviously neurological AND autoimmune, why did it take me a week and a half up here to get in to see this guy?! It seems to me that this should've been the first person I talked to. Anyway, we'll see what he has to say.

Mayo day 2

Funny story--when I got here yesterday and was checking in, they asked me to step on a scale. The number that popped up on the wall was 169.9.....I almost had a heart attack! I mean, how in the world? Then, I realized that this measurement was cm...it was my height. :D

Tonight I'm weaker than normal--the neurophysiology department asked me to not take my Mestinon for 24 hours so that the results of my EMG tomorrow won't be skewed by the presence of any latent medication. I understand that. It just makes it more difficult to move until after noon tomorrow. :)

We didn't do anything exotic today...I had an MRI of the brain and did a little shopping.

Tomorrow, we're have 2 scheduled procedures and 1 scheduled consultation, then we're going to stage a "sit in" at the neurologists' office for an appointment. :) We have an apt. scheduled for that office, but it's not soon enough.

We shall see.