Testing update

I figured I better take a minute to give you an update on my testing.  The particular one was the special lab I had sent to Missouri.  There is a specialist there that runs a clinic doing research.  There is a relatively new test called the NT5C1A test.  I don't really understand what it is but they are using it to determine if a patient has IBM - Inclusional Body Myositis.  Unfortunately, my results came in positive.

Inclusional Body Myositis is the type I believe I've mentioned before that is a icky as you can get in the Myositis world.  They refer to it as a "Slow progressing Muscular Dystrophy".  Most people are in a Jazzy within 10 years of diagnosis.  Typically there is no treatment and certainly no cure.  When I go to the conferences, you can usually tell the IBM people first of all because of their scooter but also because their arms and legs have completely wasted away.  There are no muscles left which causes their joints to look enlarged.

I don't know what to think of this new discovery.  On one side, it explains a lot why I am not like my friends with Polymyositis.  I don't have flares and periods of recovery.  I always feel the Myositis.  It would also explain why I don't seem able to make much progress in getting better or stronger.  On the other side, after my stint of going off medication in January, it is clear my body does better with Methotrexate.  I'm also clearly not wasting away.....yet.  And I can make some progress exercising at the gym.  So I don't know what is going on.

While the news is pretty depressing, I figure I have it regardless if I know or not.  It is an important thing to know what you have so you can fight.  As they learn and discover new things about Myositis, it might be helpful to know I am positive for this marker.  I probably should make plans to move forward with housing that has no steps.  And I can give myself permission to take it easy on  my body and cut back travel as I need. 

I am anxious to see the doctor at Johns Hopkins to see what she thinks about this new discovery.  It hard to believe that visit is in 12 short days. But overall, I plan to keep going as I am going and doing as I am doing.  This new information is really just another piece of the puzzle we know so little about.  I've always said if I am going down, I will be kicking and screaming the entire way!