Share this on:
 E-mail
60
VIEWS
1
COMMENTS
 
SHARES
About this iReport
  • Not vetted for CNN

  • Click to view stifflimb16's profile
    Posted February 6, 2014 by
    stifflimb16
    Location
    Burlington, Kentucky
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    stiff imb syndrome

     
    I was diagnosed with stiff person (limb) syndrome in August of 2013. Mine is in my right arm. It is caused by a high level of GAD65. I worked full time for 28 years for the same company and now have been off work since Oct 1st 2013. I was given valium, then I asked to be taken off due to not being able to function on it, My doctors put me on Baclofen, Clonazepam and I have had 3 IVIG treatments, schedule possibly for more. I also have been doing physical therapy, message therapy and hot yoga, heat helps relax my arm. I also experienced painful spasms in the beginning and sometimes now if I push to hard with the physical therapy. I have pain mostly at night when my arm is laying stiff and not moving. I wake up usually between 3pm an 5pm. I have not slept a whole night since July 2013. I'm hoping to find someone else that has stiff (limb) syndrome to find out what treatment has helped them, and to also bring more awareness to this illness, and to find a support group. I am blessed it's in my arm, but not sure if it will move later to my spine and since this is so rare my doctors can't make any promises. I have contacted Mayo Clinic in Rochester MN and they would like to see me but unless my insurance will cover it I don't see how I can afford to go. Please if possible provide support groups for stiff limb syndrome. Thank you

    ps my pic was from a couple yrs ago in Paris. I could not figure out how to use webcam or video

    What do you think of this story?

    Select one of the options below. Your feedback will help tell CNN producers what to do with this iReport. If you'd like, you can explain your choice in the comments below.
    Be and editor! Choose an option below:
      Awesome! Put this on TV! Almost! Needs work. This submission violates iReport's community guidelines.

    Comments

    Log in to comment

    iReport welcomes a lively discussion, so comments on iReports are not pre-screened before they post. See the iReport community guidelines for details about content that is not welcome on iReport.

    Add your Story Add your Story