Saturday, February 7, 2015


As I have already mentioned, Dr Komaroff my consulting CFS/ME doctor retired last year and my treating CFS/ME left the state.  In my search for a new doctor I was on the Mass CFIDS site and ran into a great page on the new SSD requirements for proof of disability with a CFS/ME diagnosis.  Under the list of things to monitor was 'ataxia'.  I had never heard of this so after consulting Dr. Google I ended up on the National Ataxia Foundation website and EUREKA!!  There was a list of my neuro symptoms!  All of them! With a few extras I had no idea were related!

  • Balance and coordination are affected first
  • Incoordination of hands, arms, and legs
  • Slurring of speech
  • Wide-based gait
  • Difficulty with writing and eating
  • Slow eye movements
The is also overactive bladder, crying jags, heart issues and low blood pressure.  All of which happen to me.

Woohoo!  I have a name!  Even more exciting I discovered that the top Ataxia Unit is near me at Mass General Hospital!  The head of the department is THE Ataxia guy in the US.  They have treatments for the neuro crap I've been dealing with for four years now and they specialize in the treatment of diseases of the brain.  I am SO excited!  I just printed out the referral forms and health history forms.  I also printed out the Stanford study that shows brain inflammation is part of CFS/ME Now I just hope that it won't be a six month wait to get in there.

No comments:

Post a Comment