[Alan Bridle]

I had severe diplopia while in the ICU during my myasthenia crisis, but it mostly cleared up after five sessions of plasma exchange (Plex),  Now my eyesight is limited more by ptosis that has not gone away completely with my mestinon regime,  Also  – when I get tired I still have trouble holding my head up or looking around to sharp angles like you need when entering traffic.  I am not driving yet (three and a half months after crisis)  but hope ptosis or neck control will improve enough to let me get back to it in time.

[Alan Bridle]

As this was the year in which symptoms that I had experienced for several years worsened and were finally diagnosed as MG, as well as the year in which it became clear that vaccine hesitancy by a large number of my fellow humans would help the coronavirus mutate into more transmissible variants, my anxiety level has definitely increased.

I do hope to keep it within sensible bounds however.  My main uncertainty now is over the best strategy for dealing with exposure to more transmissible variants for those of us who have MG and are immunosuppresed by the design of our treatments.  I have no wish to experience COVID symptoms on top of my MG but I realize that pumping up my immune system with the vaccine can also be problematic.  I wear a good quality mask whenever I am indoors outside my house or near anyone who I do not know well.  And I leave the house only for essential trips and exercise.  I am retired so I am lucky to have choices.

But anyone who is immune suppressed must feel more anxious than the general population in the presence of the fast spreading variants, so I expect some of my anxiety to remain until the pandemic really is over, globally.

[Alan Bridle]

I resonate with most of what is being said in this thread! Chronic insomnia was the bane of my life for months after my MG symptoms became severe but before I was diagnosed.  I went over three months on only two or three hours of sleep a night.  Sleep deprivation was compounding all the difficulties I had with muscle tiredness from the MG.  Some of that was mental distress from not knowing what was wrong with me, then some was panic attacks after I began to experience severe orthopnea (I was a side sleeper in a flat bed).   I tried taking melatonin but it had no good effect on me.

Soon after I was finally diagnosed with MG I went into full blown myasthenia crisis and ended up in an ICU on a ventilator for about two weeks.  In that hospital they gave me trazodone 100mg and seroquel   25mg as a sleep aid.  This has worked like a charm and I now get a full 7 or 8 hours of good sleep most nights at home.   I was also advised by my doctor to avoid melatonin as it does not interact well with MG.

Insomnia is a vicious cycle, as the mental distress from lack of sleep and concern about my symptoms worsening compounded and recycled the problem.  Now that I can sleep again I am doing noticeably better every day in most ways.

I hope the combination of sleep aids that has helped me to reach this happier state will help someone else here as well.

 

[Alan Bridle]

I had my initial shots of Pfizer mRNA vaccine in January and February 2021 before I was diagnosed with MG.   I now realize that I had been having typical MG symptoms for several years, so my MG onset itself preceded the two vaccinations.

In August 2021 I had emergency surgery to remove blood clots from my left leg, followed by intensive PT and OT in a rehab hospital with outpatient follow-up.  I was doing really well in rehab until early September when sudden onset of extreme tiredness forced me to drop out of the rehab program.

In October I began to experience orthopnea, insomnia and some difficulty breathing even while sitting in a chair.  My oxygen saturation was barely over 90% for most of the day.  My cardiologist was treating my symptoms as CHF, based on evidence that I had had a “silent heart attack” several years earlier … but with no success.

I was diagnosed with MG by a neurologist in late October but had been less than a week taking Mestinon when I went for a third shot of Pfizer vaccine as a booster.   That may have been a major bad choice out of ignorance!  I went into full myasthenia crisis a week later and ended up in an ICU on a ventilator for almost two weeks.  My neurologist has since told me I was his second patient to have had rapidly worsening MG symptoms shortly after receiving an mRNA booster.

I had five sessions of Plex while I was in the ICU and I am now on  Mestinon, prednisone and outpatient IVIG.  I am doing very much better with all my MG symptoms improving but it’s unclear to me whether I have any increased immunity to COVID from the booster after Plex and IVIG.  Perhaps only well stabilized MG patients should get booster shots because the immune system “jolt” from the booster runs counter to what our MG treatments try to do.

It’s not obvious to me what is the best strategy for MG patients in the face of the highly transmissible omicron COVID variant.

[Alan Bridle]

Insomnia was one of my biggest problems when I was first diagnosed (last November), too.  I rarely got more than two hours’ sleep after diagnosis and went rapidly downhill from sleep loss as well as from more direct muscular effects of my MG.  My primary care physician suggested that I take 100mg  trazodone before bedtime but that did nothing perceptible to me.   I went into full blown myasthenia crisis and ended up in an ICU on a ventilator for about two weeks, during which the ICU doctors added 25 mg seroquil to my night dose.   That combination gave me my first good nights of sleep in weeks and I have continued the trazodone+seroquil regime since coming home.

I now sleep through every night for six to eight hours.

Everyone is different – but in my case I know that not worrying about not sleeping has also helped me to sleep better, so there is positive feedback.  My primary care physician says to continue taking both meds (trazodone and seroquil) at bedtime even though I am generally feeling much better now as they are not addictive and their benefits to me outweigh any risks.

I had also tried taking melatonin but was advised to stop by another doctor who said it does not work well with MG and increases nocturia which of course interrupts sleep.   My life has changed so much for the better by returning to sleeping well that I hope what worked this charm for me can also help someone else.

[Alan Bridle]

I took your suggestion to report my adverse event to Pfizer. using their on-line form.

COVID-19 Vaccine Side Effects & Adverse Events (pfizersafetyreporting.com)

Unless our MG community reports incidences, I feel sure nothing about the interactions with MG will get studied.  I would like to know why MG severity interacts with these vaccines, and I suspect that won’t be looked into unless a lot of incidents like those mentioned in this forum are reported to the vaccine makers.