|Feb 09 2012|
Not much in the mood to write, but perhaps it will lighten the load.
Finally. The doctor gets that I don't fit neatly into the little classification chart of MG. There's no category for severe lung weakness, mild limb weakness, and moderate face/eye weakness, at least not that I can find. I've been preaching about my terribly low MIP & MEP numbers since the first test in January, 3 days before I landed in the hospital in crisis. Last week, a mere 2 weeks after finishing IVIG at the hospital and a round of prednisone, my MIP & MEP were lower than they had been before going into the hospital. MIP was 30, MEP was 24. For ALS patients a number below 25 runs the risk of aspiration induced pneumonia due to the inability to clear fluids. Yet my pulmonary dr told me that day, granted it was before these latest tests but after a hospital stay, that surgery to remove my thymus should be fine. Cleared for surgery.
Until now. Mr lung doctor apparently reviewed those latest numbers and sent a report to my neuro stating the exact opposite, stating that my lungs are incredibly & dangerously weak. I knew this, but no one else seemed to care. I explained this to my neuro today during a half hour long conversation about how my desire to rush into surgery isn't a good idea. So I get a new MIP & MEP next week. He says if that's good, then surgery is on, if not, no go. Well, considering I can't breathe now any better than I could the day I took the recent MIP/MEP, it's a no go.
I also laid in to my neuro, as nicely as possible, to say that we have NOT been aggressive enough with my treatment thus far and that our follow up next Thurs, to go over the breathing tests, will be about getting on that. It's like he didn't get those numbers and what they meant, until the pulm sent him a "report." Heck, even I knew what they meant!!
So now I am sad. Sad that I'd hoped to avoid the really serious meds. Sad that I'd hoped to jump on surgery and give that a chance. Sad that doctors have now confirmed my lungs are as weak as I thought. Just sad. I know it will be okay in the long run, that now must not have been "the right time" for the surgery, but I will still be sad. I deserve that much. Excluding the lungs, I've been a highly functioning MGer. Now, not so much. And I believe I have the right to mourn that loss.
Post 1 month appt
1 month into treatment
10 yrs Ago
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My Oldest Superstition.