Summerlover

Activity

• Myasthenia Gravis
  

  Mestinon

  Posted by: Summerlover

  Last Reply: PeterL 04/07/2018

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  I have not posted in quite a while. I finally found a neuro that would listen to me. Negative on labs, emg, and RNS. She is doing a mestinon trial. Wow, my ptosis reverses itself, tremor goes away, feel a little stronger and don't feel so out of breath. I take 60 mg every 8 hrs, but it starts wearing off at about 4 hrs and is totally warn off at about 5 hrs or so. Is this normal? I take it before bed but it is long gone before morning. Does Mestinon build up in your body after you take it a...

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  New Friend

  Posted by: Summerlover

  Posted: 11/16/2017

  Summerlover became friends with Td2290.

• Myasthenia Gravis
  

  Discussion Comment

  Posted by: Summerlover

  Posted: 11/16/2017

  Summerlover commented on the discussion Help?.

• Myasthenia Gravis
  

  Discussion Comment

  Posted by: Summerlover

  Posted: 10/31/2017

  Summerlover commented on the discussion Undiagnosed still.

• Myasthenia Gravis
  

  Discussion Comment

  Posted by: Summerlover

  Posted: 10/24/2017

  Summerlover commented on the discussion Undiagnosed still.

• Myasthenia Gravis
  

  Discussion Comment

  Posted by: Summerlover

  Posted: 10/22/2017

  Summerlover commented on the discussion Undiagnosed still.

• Myasthenia Gravis
  

  Discussion Comment

  Posted by: Summerlover

  Posted: 10/21/2017

  Summerlover commented on the discussion Undiagnosed still.

• Myasthenia Gravis
  

  Discussion Comment

  Posted by: Summerlover

  Posted: 10/20/2017

  Summerlover commented on the discussion Undiagnosed still.

• Myasthenia Gravis
  

  Undiagnosed still

  Posted by: Summerlover

  Last Reply: Summerlover 10/31/2017

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  Still not sure this is what I have. Now on neuro number 3. Had an appointment in Boston with specialist. Wasted trip. He basically said can you hop? I tried, made it off the ground may 1/16 of an inch, then he said I was fine, and asked " what would you like me to do for you?" No further tests, nothing. All blood tests negative. My new neuro has scheduled me for a second EMG because he wants to see for himself. I have ptosis but no double vision, however I did have an optical type migraine...

• Myasthenia Gravis
  

  Discussion Comment

  Posted by: Summerlover

  Posted: 06/22/2017

  Summerlover commented on the discussion Waiting on diagnosis...HELP!.

• Myasthenia Gravis
  

  Discussion Comment

  Posted by: Summerlover

  Posted: 05/07/2017

  Summerlover commented on the discussion Frustrated.

• Myasthenia Gravis
  

  Discussion Comment

  Posted by: Summerlover

  Posted: 05/06/2017

  Summerlover commented on the discussion Frustrated.

• Myasthenia Gravis
  

  Frustrated

  Posted by: Summerlover

  Last Reply: stevebert 05/08/2017

  5

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  Hi everyone. I am being worked up for this. I have had difficulty swallowing for a couple of years. I had a thyroid nodule that we thought was the cause, so I had surgery to remove it. Only slight improvement. I had to have a 3 level discectomy with fusion in January of this year. I was home 1 week, when my swallowing got worse. I went back to ER where they admitted me. They did CT scan of neck which showed a collection of fluid, so they admitted me for steroid treatment. I was not able to...

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  Joined New Group

  Posted by: Summerlover

  Posted: 05/06/2017

  Summerlover joined the group Myasthenia Gravis.

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  New Friend

  Posted by: Summerlover

  Posted: 05/06/2017

  Summerlover became friends with TeamDS.