Today, March 1st, is the beginning of the March Awareness Month for MSA.  As many of you already know, this is a rare disease with no cure.  Partly due to the lack of funding for research.  This March marks the 4th annual Multiple System Atrophy Awareness Month. Miracles for MSA urgently request public support to create greater awareness of the need for research funding to aid in discovering the cause and cure of this fatal neurological disease. 

       Miracles for MSA request public support in spreading the word about this rare and fatal neurological disease and the desperate need for research. Time is running out for those currently diagnosed.

here are some links.

 http://www.msaawareness.org/

http://www.prlog.org/12062758-march-is-multiple-system-atrophy-awareness-month.html

     Please just take the time this month to post and spread the word, the links to friends and family so that somehow we can find a miracle.  And as always thank you for your support.

     Again, we've been deferred for many obvious reasons of posting and updating our blog.  So here we go again.
     Lately, it seems that the MSA is taking a back seat to my heart as well as the excruciating and debilitating pain I've been experiencing.  The pain is in my neck shoots down to both arms.  I've recently visited a pain management doctor because my primary physician can't seem to be able to manage the pain.  I've taken cortisone shots, in my shoulder and neck--to no avail.  The most recent has been now morphine which basically seems to take the edge off but it causes me to have difficulty breathing at night.  My tongue has been somewhat swollen and I suffer from dry mouth.
     As for my heart, after an echocardiogram and blood work it seems that my heart remains pretty much unchanged from pre-op except for the repaired mitral valve.  My heart is still not working at our desired capacity of 45-55% (which is the norm) and it shows that the heart is still enlarged.  My new heart specialist feels that we should start these new meds so as to improve the condition of my heart.  The desired effects will not be known for at least 3 months.