[russ]

It was 10 am on a nice morning in May, and I was mowing the lawn with a riding mower and I started having double vision. It was bad enough I had to shut one eye to continue mowing as the double vision was confusing. It persisted the rest of the day, but the next morning was OK until about 10 am. And then every morning was the same with one of my eyelids drooping a lot.

I went to the eye specialist at Mayo Clinic in Rochester about 3 days after it started He was quite interested in my symptoms, and talked to a colleague. Then he applied ice packs to my eyes for maybe 2 minutes with the drooping lid going away.

“80% chance you have myasthenia gravis,” he said, “I am sending you for a blood test next.” And two days later the test showed ACHR + MG diagnosis. Although that was the first symptom that actually led to a diagnosis, I had been complaining of tiring quickly and getting out of breath for at least a year before. So that may have been some early signs. From the eyes, within 2 months my MG included my head and the rest of my body and breathing and I was in the hospital with breathing issues.

I spent quite a bit of time googling MG trying to figure out what I had as between my eye visit and the neuro visit was several weeks where I was pretty scared and wondered if I was going to die.

[russ]

The book on Amazon is at https://www.amazon.com/dp/B0F2F8QL6B?ref_=pe_93986420_774957520

[russ]

From my time on the MG forums back when I was having the bad time, it appears to me that we all have our own version of MG, our own path through treatment, and our results vary widely.

I had worked in medicine as a researcher for 25 years before I got MG. I think that gave me much more confidence to try to take on my own treatment, especially in things like tapering medications and taking them as needed (mestinon).

One hopes that our neurologists have experience in MG, are up to date on new treatments and have the time to really concentrate on our own case. However, that is being very optimistic!

Good Luck

Russ

[russ]

I found writing an outlet that helped me through the problems.

[russ]

I did not know I was in remission. My neuro and I had decided to switch from prednisone to a different autoimmune drug (I can’t even remember which one). Anyway, I was to taper prednisone down as low as I could while starting the new drug gradually. Prednisone was pretty much controlling my MG symptoms without mestinon, and most of my issues were prednisone related.

I had read that some folks do go into remission after a year or so (rare, but possible). I rather strongly told my neuro I would like to taper to the very lowest dose of prednisone I could take and still have MG under control, before starting the new drug. I wanted to know if I could get by on a very low dose, as I knew that prednisone did work for me. She didn’t think that was a good idea. However I persisted and went on my own gradual tapering, dropping a little every couple of weeks.

My neuro, when she realized I was going to do this, gave me suggestions. “Don’t cut the daily dose, just take it every other day, and if that works try every 3rd day, 4th day etc. You know if MG is coming back by your symptoms and if needed you can take mestinon again if you get in trouble.”

And so at maybe 20 mg per day, I started skipping days, eventually going a whole week with one dose. And then I quit completely. I also noticed that if I took mestinon, it didn’t help with anything, just made me twitchy, like what happens to a normal person who takes it.

The biggest problem was since prednisone had shut down my adrenal glands, they needed to start up again. Without them and without prednisone, one gets very many aches and pains, the kind that painkillers fix — so different than MG. I think about 6 months after I got off all medications I was feeling reasonably normal again, and I never have had any MG symptoms since.

I asked my neuro if I could have a antibody test while in remission to see if the bad antibodies truly had disappeared from my system. She said that having had MG, I would never have a normal test. I wonder if that is true.

I think I had some inkling that I was going into remission while still on prednisone. What seems to me made the change was when I was put on testosterone replacement for osteoporosis and severe hypogonadism. The T replacement gave me some ambition, my muscles started returning and I felt much better. And that is when I first noticed that the MG symptoms had pretty much disappeared. I asked my neuro about that — not very likely as cause effect. My endocrinologist said “When your endocrine system is screwed up, there are far more things that can go wrong that most of us realize.” I was told my hypothyroidism, my hypogonadism, and my MG were all autoimmune related.

I do not recommend others following my path. I suppose I am one of a kind, a very lucky person.