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...

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Muscles & Bones
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Remission or relapse

tracy88
tracy88
I feel frustrated!

About two years ago my symptoms seemed to vanish I was taking little to no medications. For those two years life seemed normal for me and now symptoms are returning. Now I have to start over from scratch. I am supposed to have an IVIG in a couple weeks and restart mestinon and Imuran. Did I mention both the IVIG and start up of mestinon made me have flu like symptoms(of course who wants to go through that for a second time). I am also scheduled to have my tonsils removed next month. Lots on my plate right now and I am sure others have similar stories.

Has anyone had a similar experience with remission? do I hope to loose the symptoms again?
snowbeltfolkie
snowbeltfolkie
Yes, lots of people seem to have the same experience as you.
Peaks and valleys, sometimes even also running in 2 year cycles.
Check with your Neurologist, about having your tonsils out.
If you get the green light, also talk with your Neurologist, about having that IVIG, much closer to the date of the surgery, maybe even just a few days before.
Many people here - have found that IVIG, just before surgery, seems very helpful.
Sorry you've had those flu-like symptoms. People do report that kind of reaction, with Mestinon. I don't take Mestinon myself, maybe others can talk to you about dosages and the timing of Mestinon.
I always take a few low-saltines, shortly after my meds. That seems to help with some side effects.
Keep us posted, good luck!
Barbel
Barbel
I understand how dissappionted you must be! MG is not fun company. The Imuran gave me flu like symptoms for about 2 weeks. I had chills and body aches. The mestinon behaves itself if I eat a small snack with my dose. Hopefully the IVIG will help get you on track. At least you know what to expect and what to do this time.

Remember that we, as MGers are sensitive to antibiotics, anestheia and pain medicine. There are lists and you can google it. Also, there is good information on the members link on this page. Propofol is the only anthesia that I have succussfully used for surgery.

Best Wishes to you.
Bamboolilly
Bamboolilly
I pray for better days for all of us. I've only had a glimpse of normal days. Ivig has been cumulative for me, so I hope it is for you as well. It will be interesting to hear if you reach remission sooner this time around.
Wellness,