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Myasthienia gravis

wilson888wilson888 Posts: 3Member Listener
edited September 11 in Neurological conditions
Hi my name is wilson I was diagnosed  with myasthenia gravis  almost  2 years ago none  of  the medication  seems to be working has anyone  had similar experience 

Replies

  • CressidaCressida Posts: 90Member Pioneering
    @wilson888 I was diagnosed with MG in my early twenties and if my memory is correct I was on mestinon and steroids. After neurological tests I went onto to have a thymectomy which worked for me. I gradually tapered off drugs and now I am almost symptom free except for facial drooping when tired.Unfortunately it was the start of my autoimmune journey. I'm sure treatments have changed a lot since the 80s. Good luck. Do you know you are entitled to free prescriptions? It was very rare when I was diagnosed 1 in 500,000. 
  • wilson888wilson888 Posts: 3Member Listener
    Thanks cressida, glad to hear you are almost  symptom free, I would  love to stop the steroids, I've just had ivig treatment  3 weeks  ago so fingers crossed  this works 
  • CressidaCressida Posts: 90Member Pioneering
    Hello @wilson888 how long have you been on the steroids for? Are you on Pyridostigmine? It's great you are getting the ivig treatment, I'm sure that treatments are much more efficient nowadays. Do they still carry out thymectomy? If you want to pm me for any details please feel free to do so. After I was diagnosed I did join an MG group, in those days it was f2f in somebody's home, before the days of internet forums :). I assume you are under the care of a neurologist? Just to reassure you that my symptoms are very mild, the last time I saw a neurologist was several years ago and although antibody in my blood was fairly high I was not showing any symptoms. I just assume I am still in remittance. 
     
  • wilson888wilson888 Posts: 3Member Listener
    Hi  cressida, I was on pyridstominge didn't  agree with me  bn on 150 mg Azathioprine daily for 18 month, prednisolone  for 14 month  was at 100mg every second day  but down to 40 mg every  second day,  I can't  walk very far  my legs get so weak  so do arms and chest muscles, so hopefully  the ivig works
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