St Croix River Road Ramblings

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Wednesday, June 13, 2012

Myasthenia Update

The MG is progressing rapidly.  In the mornings I feel it most.

May 17th  I started having persistent double vision, one image above the other.   After a series of tests at Mayo Clinic in Rochester, MN (where I  worked most of my life), I found I have an autoimmune disease, Myasthenia Gravis, a condition where your body attacks the nerve-muscle interface.  Now, almost four weeks later, I am in a treatment program, watching my symptoms progress far too fast.

The symptoms have progressed rapidly beyond just the double vision.  Early on I noticed weakness in chewing--after a few bites, my jaw felt tired.  I also overall felt tired, somewhat weak and dizzy.   This morning, I notice that even my fingers have trouble typing--sort of worn out.

I take pyridostigmine (Mestinon) as soon as I wake up.  For the first few weeks, I woke up relatively normal for a little while, but I have less time now.  I take the pyridostigmine right away with the other longer term prednisone.  Pyridostigmine takes 30-60 minutes to kick in and then makes me dizzy and weaker before catching up and jump-starting me towards a more normal day (although I suppose the side effects might be from the prednisone--will try taking pyrid first and then an hour later prednisone to see tomorrow).

Eventually, in a two hours or so, I can do physical things OK.  I am supposed to take 3-60 mg pyrids per day, but find that they wear off in about 4 hours, so am taking an extra one in the evening.  The medical information on the internet says that each person has varying requirements.  I think I might end up with 5 per day to function OK while the prednisone knocks down my immune system creating the problem in the first place.

I am debating this morning whether I continue spraying the 30 full size apple trees at Mom's this year.  I want to, but my ability to do it is questionable, especially in the morning while waiting for function to improve.

What bothers me most is the rapid increase in symptoms and weakness--going from what seemed normal 4 weeks ago to being unable to follow the garden tiller around the sand garden yesterday without several rests and feeliing like I was going to fall over.  If I get too weak, Mayo does a blood apheresis,  where they run your blood through a filter machine and remove the unwanted antibodies and clean you out for a few months improvement.

However, much of the day is better; the prednisone should soon be helping, and in a few months I hope to be functioning normally.  My brother, Ev, who three years ago went through 5 months of chemo for leukemia and now as been in full remission for several years told me "five months of misery followed by 5 years of decent living is an acceptable tradeoff."