Recovering from Crisis and...

By Sdlarter

1 min read

Hi, I’m a 54-year-old Canadian woman who was scheduled for bariatric surgery at the beginning of September….

But then...

I was discharged after being in the neuro unit for a week because of a myasthenic crisis.

Myasthenia, what?

My ophthalmologist ran blood tests, in late August/early September, which identified this diagnosis. A disease I had never heard of before.

I have a lot of specialist appointments this week. I’m on Mestinon (60mg 4x daily) which doesn’t seem strong enough and prednisone (dosage being adjusted all over the place, I’m not functional at even 1/2 tab).

Where do I go from here?

I’m not sure how to ‘manage’ this. Is it a disease? A disorder? Is there a remission? So much conflicting information. I’m researching as much as I can but have a lot of added stress and anxiety right now due to the dire need for employment.
I never feel rested but never really feel sleepy, either.

Is there someone out there who can help to direct me please? I’m really not too confident about how to best manage this.

Thanks and be well.

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jennyrose Member
Hello hope you are having a good day. I know how it feels to be unrested and exhausted I myself face these problems many of the times but now after adapting meditation and yoga i have been seeing some difference in my body. also view my profile if it can help you in anyway and all these activities feels good and fresh. Take care lots of love ! <inline-mention username="Sdlarter" user-id="6610765"/>
Sally Farrier Moderator & Contributor
Sdlarter.... Myasthenia Gravis is a neuromuscular disease. Mestinon or the generic form does not fight this, it sometimes only lessons the symptoms, for some of us. Immune suppressants like Cellcept & others, along with for some people prednisone, (hopefully for short term use.) IVIG & plasmapheresis treatments are what some people use also. Along with a thymectomy. Unfortunately, there is no quick fix and each of our treatments are different. While some can obtain remission for a while most do not stay in remission again, we are all different. With bariatric surgery at the beginning of September…. then a MG crisis on top your body, (just guessing needs rest). Surgery alone is hard on a person's body and take several months to adjust, from my experience. Hugs & Love to you!! Sally Farrier...Myasthenia-Gravis.com (team member). https://myasthenia-gravis.com/treatment
Cheryl Member
 Completely understand the feeling of being on a sailboat without sailing experience but with no way off. When I finally got Mestinon it made such a difference but the MD direction was simply"play with it". I knew too much could be just as bad as not enough and felt the condemnation of doing it wrong. I settled on 180mg extended release Morning and night. Recently insurance was messing with me so tried 45mg every 3 hrs which theoretically was the same but had rollercoaster of effect. Positive attitude doesn't get the dishes done, vacuum or put clothes away let alone get food. I have also discovered viral illnesses make me feel like never had mestinon to the point breathing, eating, holding my head up are Olympic events. Because of being sero neg, all the treatment I can have is Mestinon which I fervently hope keeps me going forever. I couldn't work after 58,couldn't find a job for wobbly, fall prone person who can't tell 3,6,8 apart, hold head up, speak clearly and needs to be able to dash to loo, lay down when exhausted. That didn't even touch the great sadness in not being able to bike , cross country ski, rehab the house with my own hands, travel, go to things 90 mi away and be able to drive safely after dark. I have simply stopped interacting with people, they are too judgey, superficial and glib, too cavalier about how illness affects me and for how long. I have felt INVALID, not just disabled both in the 5 yrs undiagnosed and the 22 mos now on mestinon. I wish there was something to be said that would make everything clear, make it all easier and less scary other than at least you aren't in Ukraine without heat and being bombed!
Sdlarter Member
Im wondering if anyone has some sleeping position advice. I’m not able to sleep flat. My airways start to close and breathing is difficult. I’ve been sleeping sitting propped up on pillows so my airways aren’t constricted and so I’m able to swallow. My bed is medium firmness. I begin the night in a sitting up position, around a 50-60 degree angle. Right now, anything less isn’t high enough to be effective. I use a wedge and pillows. The problem is that I end up slipping down throughout the night. I wake up from breathing issues, re-do the pillows and do it all again. I can’t afford a hospital or adjustable bed. Does anyone have this sleep position issue and if so, how do you manage it? Thnx
1. CommunityMember58029e Member
 <inline-mention username="Sally Farrier" user-id="4153220"/> hi there. I’ve now had a lung test and I am waiting for my sleep apnea test. I did have a negative test back in 2016 but things change. All I know is I’m pretty tired. Thanks!
2. kaitlynsutton Community Admin
 <inline-mention username="Sdlarter" user-id="6610765"/> I wanted to chime in here to also share Sally's awesome article about pillows that you might find interesting: <a href='https://myasthenia-gravis.com/living/comfortable-pillows' target='_blank'>https://myasthenia-gravis.com/living/comfortable-pillows</a> - Kaitlyn (Team Member)
Debbie2025 Member
I was in the hospital for two weeks in ICU with a MG crisis. During that time my neurologist ordered 7 plasmaphoresis treatments. When I was released from the hospital I went to a long term care facility for 2 weeks of rehab. Luckily I live with my son, so I have someone who.can help me when I need it. I think the plasmaphoresis treatments really helped more than anything I had been taking (Mestinon, prednisone). I continued those two meds and my neurologist added azathioprine, which is an immunosuppresant. I have been somewhat stable since than. I still have pain and have to lay down most days but at least I can function somewhat normally, driving cautiously, have a cane to help with balance, and my son to help with chores. I hope this helps some of you.
Juliana Texley Moderator & Contributor
One more note: Mestinon isn't a "cure" for MG. It is a bit like a Tylenol; just manages symptoms for a short time. Prednisone isn't really a cure either for the long run. It works, but it can have significant side effects. When your diagnosis is more firm, your doctor will probably prescribe a gentler immunosuppressant that works very slowly but causes more permanent improvements. There may also be an infusion treatment with the same purpose. This is a condition that can be beaten, but really requires patience. Juliana (team member.)
Sdlarter Member
Oops/- hit enter by accident. Yo complete the post, I was saying/asking that MG seems to be a life-changer. Or, after all of the medications and treatments are figured out, does it just go back to life as usual with some modifications? I’m wondering what others have to say about that. <inline-mention username="Juliana Texley" user-id="4153227"/> what are your thoughts? I’m trying to get an idea what to expect. 
1. Juliana Texley Moderator & Contributor
 I so not need to give up all of your favorite Activitis? We use Alexa a lot.
2. Juliana Texley Moderator & Contributor
 <inline-mention username="Juliana Texley" user-id="4153227"/> With your doctor's help, learn to read your symptoms and pace your activities. My own husband knows that if his double vision returns he has done too much. Juliana (team member)
Juliana Texley Moderator & Contributor
We certainly understand your confusion, and welcome you to this community. While we are not doctors and you shouldn't rely on the site for that sort of advice, we often do have the experience that can send you to the right expert at the right time. My first caution is that MG is still a pretty rare condition. Not even every doctor has the same depth of experience. In our familiy, we have a medical system where all of our specialists can communicate with one another, and that helps. Our PCP almost always checks out the neurologist before our visits. There is an ENT in the loop too, because hubby aspirates significantly. Like you, his diagnosis began with the eye doctor. You mention a need for employment. That's an area where this community might help, too. Some jobs are far more amenable to adjusting to your needs than others. Is there a vocational counselor in your community? Tell us more, and you may get great ideas. One general recommendation: Don't interview by saying "I can't" but think about "I can do that well with some modifications...." Of course, learning how to modify is something that we can all help with too. Keep a positive attitude, but also always be realistic. And keep in touch. Juliana (team member.)