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    • #16529
      Tim Lindsey
      Participant

      I was diagnosed with generalized MG Sep ’20. Within 3 weeks of first symptoms, I couldn’t speak, eat solid food or breath deeply. I began Pyrodistigmine, then later IVIG treatments, and in December ’20 immunesuppression Rx. I have had a slow but steady improvement to maybe 80% normalcy until one week ago.  I am now experiencing a setback of symptoms of about 3 months progress.  I do not know the reason for this, but am researching and searching my mind for behavioral clues, etc.

      I was given a muscle relaxer by my Pri-care for back spasms and used them regularly for a month or so. I have also been active outside with golf, yardwork, etc, in the nice weather.  My upbeat pace and the muscle relaxer combined is my best guess for the backward bounce.  Still working on a theory so as to avoid a repeat.

      I’m fighting my way back with increased Pyrodistigmine & a more relaxed schedule. ‘Gotta find my new ‘me’.

    • #16530
      Ari Maayan
      Participant

      Hi Tim,

      I am sorry to hear about your difficulties with your MG. I hope that you will soon be on the upswing.  I have read that it is not a good idea for folks like us to take muscle relaxers. The way our autoimmune disease works is similar to what muscle relaxers do. Maybe someone has more complete or different information than what I just wrote. If so I welcome any information.  I have 2 doctoral degrees in the biological sciences but what I got out of all that education was the enlightenment that there was a hell of a lot that I didn’t know. And every day I seem to know less.

    • #16539
      Tim Lindsey
      Participant

      Ari, thanks for your response. I also read some warnings against muscle relaxers, but my neurologist and pharmacist both say any bad effects on MG would be minimal. I still don’t think I’ll use them, but I’m glad I did some research and reached out to them. I’m being very careful about every medicine and supplement I take, to try to ensure they aren’t arguing with each other or affecting me negatively.

      I have had a setback in my progress with MG, so I’m evaluating my lifestyle, etc, to prevent them in the future if possible. I had been on an upward trend, and would like that to continue.

      I also appreciate your comment about advanced education. I too have given institutions a lot of money to remind me how much I have to learn.

    • #16542
      Ari Maayan
      Participant

      Good thinking Tim.  Glad to hear that you are on an upswing. Hang in there Buddy!!!!

    • #16606
      Tim Lindsey
      Participant

      I wanted to post that I have fully recovered from my recent MG setback. I am back on an upward trend toward minimal manifestations of symptoms.  What I have learned is that I cannot behave as I did before MG took hold. Just last summer, I was on the golf course in any weather 3 or 4 times a week. Now, the weather report and last night’s sleep have to help dictate. Likewise with yardwork etc..

      An increase in my Pyrodistigmine & an IVIG treatment pulled me out of my slide, and I am grateful again for a caring neurologist & for God’s healing.

    • #16607
      Ari Maayan
      Participant

      Hey Tim,

      Great to read about your recovery. May you get better and better every day!!!

    • #16611
      Kenneth Berg
      Participant

      I, too, had a setback, more like an exacerbation, that lead to worse symptoms than when I started. Including the ones you mentioned, I couldn’t walk but for short distances, little strength and ended up using a wheel chair on a cruise! The culprit was ALCOHOL, liquor. I no longer drink and I’m as good as ever. I do 5 ~ Pyridostigmine, 5 CellCept and 5 mg of prednisone a day. The only thing that still drains me is hot weather so I try to minimize direct Texas sun.

    • #16616
      Ari Maayan
      Participant

      Kenneth,

      As you may know, excessive heat, excessive cold….and of course alcohol can trigger a myasthenic crisis.

      Best wishes,

      Ari

    • #16619
      Thomas Lee Clark
      Participant

      Kenneth, I don’t smoke, chew or drink liquor. Most of the recent and newer meds I have never taken. Sunlight, especially if I wear dark clothing, saps me. A shower too hot does the same. I rest until I recover enough to go ahead with activity. This seems to be the only residual I have after my thymo about 20 years back. Stay the course.

    • #16626
      Tim Lindsey
      Participant

      Kenneth…  glad you found the culprit & took care of it.  MG is so personal and requires a lot of time & study.

      Hang in there!

      • #16628
        Kenneth Berg
        Participant

        Funny, I was drinking moderately no problem. Then one evening before a cruise, went out to celebrate, had a margarita and by next morning, was very weak on way to airport, used wheelchair, etc. Not realizing it was the alcohol, because I had been drinking moderately, I drank a little on the cruise and it really got worse. Couldn’t swallow, lift, walk much. Then it snapped it must have been the alcohol. Haven’t had a drink since and doing very well. Stay healthy!!

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