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
/ Myasthenia Gravis Support Group

When nothing works

desertwindartist
desertwindartist
I am 63 years old and was fine until I had wrist surgery 4/15/2015. Immediately after I started having rapid loss of strength. It took 2 months before I found a neurologist who identified my problem as MG and put me on medicines. He started with Cortisone and Mestinon. Neither have seemed to work. When I first went to him I couldnt even hold my head up. I worsened rapidly and became severe nearly overnight. He put me on Plasma Exchange treatments and they didn't work.After the 5th during which my blood pressure dropped to 80/60 I declined the next one. Its been a week since I had the last one and I feel no improvement, actually getting worse. I am bedridden, cant brush my hair, have a neck brace to hold up my head but now my arms are so weak I need help getting dressed. I take one Modafinil in the morning which helps marginally and 3 60mg Mestinon during the day with the timed released version at bedtime. I am bedridden and desperate to find some treatment that will work, and that BlueCrossBlueShield insurance will pay for. My Dr has told me there may be nothing that is going to help me but he is suggesting the Immunoglobulin IV. Its just too expensive and temporary to appeal to me. Can anyone suggest anything that might help me? At this point all I can do is write my will and make my final plans.
sylviacalderon
sylviacalderon
Definitely look into increasing the Mestinon dosing. Also, I find on difficult days that splitting a 4 hour dose in half and taking every 2 hours helps. For example, if I take 120 mg every 4 hours then I would take 60 mg every 2 hours. The half life for Mestinon is short meaning the effects are short lasting.. Also, maybe take the time span during the day instead of at night so when you are up you can function.

I am blessed that I have an HMO and never see a bill for all of the expensive treatments. This may be something you will need to evaluate come time for insurance renewal in the fall. While there are more hoops, a good primary care physician can make the hoops easier to handle. I am on a first name basis with the referral coordinator at my doctor's office and also have a case manager with my insurance company to assist with pushing referrals through.
desertwindartist
desertwindartist
Thankyou SylviaCal. I have upped the mestonin to 2 60mg pills every 4 hours but I think I will try your suggestion of 1 every 2 hours because its not lastin 4 hours, Thanks! I'm on my husbands insurance (BCBS Federal) and to stay with it till I get on Medicare.
tyethede
tyethede
Desertwind....another Sonoran Desert resident here. Its a small world!

Its been hard because of an active life/work/home situation, but pace, pace, pace yourself. That's what's been the hardest for me, but also been able to keep me going! Also, good diet with TONS of water.

My Nuero hasn't diagnosed me, but is sure treating me like its MG. I found out that MG is/was one of his research areas, so I feel like I REALLY lucked out with him. Only been seeing him about 9 months, but I feel like he knows what he's doing.

Take care!
scidude
scidude
I got bad for awhile a year and a half ago and was on the brink of (and I mean hours away from) ending the hassle and frustration. Then I found this group and decided to explore the advice. I changed my neurologists and he put me on 5 days of IVIG the beginning next day. The only thing I can suggest is that you should try the IVIG, because that's what brought me out of my worst issues with weakness. I couldn't brush my hair or teeth, and putting on pants in the morning took 15 or 20 minutes. Once the IVIG was given, it quickly brought me up. I still have issues with controlling my eye muscles and focusing, but no more weakness. I campaigned hard for, and received, a thymectomy a year ago. Not sure if that has made any difference. Doesn't your insurance cover the IVIG? If not, time to change plans.

Good luck.