St Croix River Road Ramblings

Welcome to River Road Ramblings.

Friday, June 29, 2012

MG Update

Six weeks ago, while mowing the lawn I started having double vision that persisted from then on.  The next week I went to Mayo Clinic and walked into their emergency eye clinic and was diagnosed with Myasthenia Gravis.

Since then, I have had a steady decline in my voluntary muscles that has led to a series of doctor appointments; a stay in the hospital, and a handful of pills every day.  Each day seems to be a little slower--more fatigue, less ability to do things, a steady path downward.

MG is one of those Stupid Design functions of our body.  My own immune system decides that a part of me is the enemy and goes after it by building anti-bodies that flood the blood stream and go out and block and kill muscle receptors in the area where nerves and muscles talk to each other.

There is no way to turn off the immune system making this particular antibody, so the treatment is two fold:
   1.  A short acting medicine, pyridostigmine, that acts to make better use of existing function
   2.  Prednisone to shut down the immune system altogether so it stops attacking me

The current strategy is to use enough pyridostigmine to keep me breathing, swallowing, and functioning at somewhat of a livable level while increasing the prednisone gradually and hoping that the side effects will be tolerable.  The doctor says the first few months are the worst, then it gets under control and we move to a "maintenance" level of medicine.

So far, the disease is progressing more rapidly than the treatment.  Patience for the patient is the counsel I get from my neurologist, who by the way is a plain spoken, direct and good doctor at Mayo.  MG patients are actually relatively uncommon and so few doctors see more than a few a year.  At Mayo, of course, there are more because of the nature of the place.

Dad had Parkinsons disease.  Over 20 years he gradually declined from normal to very weak. It was a gradual process that he adjusted to gradually--although he never really adjusted to the level of almost complete weakness at the end.    My adjustment has been overt 6 weeks, a real shocker!
However, I have some hopes of returning to a higher level later in the summer, although, it appears that I may never return to full physical normal functioning again.   The good news is that when I get through the early stages, I should be able to return to acceptable functionality again someday.

I was cheered up by seeing the Supreme Court leave Obamacare intact.  Having worked in the medical field  most of my life, I know that  this is not the  answer to everything, but it certainly was a atart that could be made better if both political parties would work together on fixing problems that show up.  It is ridiculous that in a country as rich as America, there are so many folks that don't have access to medical care except through emergency rooms, and that there are a whole lot of folks that think that is perfectly OK.