Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi All
I am guessing that this has been discussed many times in this forum, but i am really struggling to understand how we move between the highs and lows of MG. I refer here to how do we address or attack the correct things.
For the initial few months after my Thymectomy, I felt pretty awful, loads of fatigue and general weakness of my eye and neck muscles. But as time progresses, so i got to feel better, to the point that I was on a very low dose of prednisone, and only about 240mg of Mestinon a day. I had a great summer, traveled to Rome in the heat of summer and did not really feel any major side effects. I still felt some fatigue and had to take my Mestinon when my body told me to.
But now for the past 4 weeks or more I have really been feeling weaker, my 'strength tests' show that I am struggling a bit. On the advice of my neuro I have increased my Prednisone - but cant say that I feel the diff.
So what I was wondering,
- how many of you have experienced this sort of sump in your condition,
- What did you do to overcome it, is it a thing that just takes time, do I need to consider a IVIG treatment, do we need to attack the MG disease, or do I see if things progress till the point that I am sure that I need a change in treatment?
Basically, do we pull through these slumps in condition
Again, any insights, thoughts comments and experiences are very welcome. I learn each on this forum
Regards
Christo
I am guessing that this has been discussed many times in this forum, but i am really struggling to understand how we move between the highs and lows of MG. I refer here to how do we address or attack the correct things.
For the initial few months after my Thymectomy, I felt pretty awful, loads of fatigue and general weakness of my eye and neck muscles. But as time progresses, so i got to feel better, to the point that I was on a very low dose of prednisone, and only about 240mg of Mestinon a day. I had a great summer, traveled to Rome in the heat of summer and did not really feel any major side effects. I still felt some fatigue and had to take my Mestinon when my body told me to.
But now for the past 4 weeks or more I have really been feeling weaker, my 'strength tests' show that I am struggling a bit. On the advice of my neuro I have increased my Prednisone - but cant say that I feel the diff.
So what I was wondering,
- how many of you have experienced this sort of sump in your condition,
- What did you do to overcome it, is it a thing that just takes time, do I need to consider a IVIG treatment, do we need to attack the MG disease, or do I see if things progress till the point that I am sure that I need a change in treatment?
Basically, do we pull through these slumps in condition
Again, any insights, thoughts comments and experiences are very welcome. I learn each on this forum
Regards
Christo
When the immunosuppressant finally brings the MG symptoms down, due to the antibodies being suppressed, and the muscle receptors growing back to normal level (which can take months after the antibodies are gone) we finally get to the peak, however by that time we may have dropped too low with immunosuppresant (prednisone for me) so the antibodies are again building up, and damaging the receptors again and so on.
My neurologist prefers me to error in too much prednisone rather than too little -- and would be happy with me at 20mg every other day as a maintenance dose if I can get that low. So far she has been quite accurate in her predictions for me and so I am happy to follow her plan--and 4 months after diagnosis, I am pleased that things are working as predicted (slowly, gradually things are improving).
Good Luck
I am still trying to figuire this out. Each time seems different. I keep thinking if there were a recioe or specific patternit would make it easier to adapt to deal with.
When I get really weak, reat and plex are my answers. That might change in a few months. Rest is the only constant I see. When I feel pretty good. I do go ahead and get out and do as much as I can. I think for MG'rs this can be overdoing if you havent been stable for a while?
Like I said still working on this one myself.
Jeannie
Sorry your MG has increase these last 4 weeks. You have been doing so well with all of your traveling.
Maintenance IVIG or plex seems to keep me stable.
Hope you are feeling stronger soon. Love reading about your holiday travels.
hugs
sherry
I need to try and work out how to get the balance right with a very demanding job, with quite extensive international travel.
.
I look forward to some more insight from others on how we flow from the highs to the lows
Yep the travels can be exciting, but I only really enjoy the trips with the family, the business trips are tough, especially trying to handle jet lag and getting the required rest that I need. My that is my issue to sort out. I guess I have 'worked' myself into this low. But I will get it turned around I am sure !!
That reminds me, i should get around to posting some new Pics from this summer. Watch this space !!
Rgds
Christo
i think hidden stress can aggravate our MG -- I've had a thing at work that is not major, but it is somewhat stressful, and it has set me back a bit. Any worries or obsessions can make our MG worse.
Also, any kind of seasonal cold or allergy will be 2X worse with MG. A cold I once could muscle through is now something I need to take sick days for.
I am so glad you were able to enjoy Rome! I think when we are happy, our M.G. doesn't bother us that much, but any kind of overexertion will eventually come back to bite us over the next day or so. But if you are happy and content you can deal with it much more easily. Let's all go to Rome!
~joe