[Marr]

So this is what this sudden onset of terrible weakness for over 5 months is probably all about. The Neurologist is considering a Diagnoses of Myasthenia Gravis, hence my coming here. He went on a 3 week vacation the day my blood work came back (the story of my experience work in appointments around doctors vacation schedules). I had the results also sent to my Internist who couldn't read it. So hopeful I will know something next week, otherwise the 30th of Sept I'm set for an office visit. Wouldn't you know my husband is being called in for Jury Duty starting 2 days before. We don't want to miss this appointment as he is super busy. We have only 2 Neurologist locally and the other one is partly retired. Since the Dr. gave me a trial prescription of generic Mestinon and is having some effect, we understood that if it did it was likely I have this. So my husband explained the MG was effecting weakness in my limbs, and sent along a brochure and proof of doctor stuff to prove we were legit. Fortunately this doctor is familiar with MG and actually has helped a pilot that can fly again. I feel fortunate in that regard and hope that I'll be able to get a more normal life functioning back again.

I did have about 4 months again where I was in the hospital (small medical center type), when they thought I might have had a TIA. I briefly lost my ability to speak and couldn't form proper sentences even in my mind, adding in words that didn't make sense like "cake" when I was trying to say I felt an odd sensation in my head. I actually adjust my glasses because I thought they were asque. I had no eyelid or mouth drooping, I had had periodic tingling, dumbness in my extremedies and face and head, and did for a long while lasting hours and or days.

Then it went to a full body, what I called a biochemical feeling that eventually brought on nausea when I was upright. I'd spend long hours 4-
8 hours in bed recouping, as even reclining on the couch wasn't helping either. I kept having to cut steps on basic routine activities everything from personal care, to cooking. Even doing that could send me to bed. I remember thinking I could "rest" typing on my laptop waiting for my hair to dry naturally, when I would lose the ability to even push a key with one finger. I'd do minimum stuff to get ready to go to church and then not be able to go. Even on a good day I'd tried cleaning just one sink. I'd get half of it down and have to quite and lay down for an hour. I never thought I'd daydream of doing housework.

On the generic Mestinon by the 3rd pill I can now drive myself 25 mph round trip to the bank and home, round trip 2 miles. I don't have energy crashes showering and washing my hair. I can sometimes go out of the house without using a cane, but I also realize that right now I think I need to keep it handy as so I don't make the hours not on medication make my muscles feel so heavy but instead be more to a "newer normal" of lighter generalized weakness.

Has anyone else felt more of a generalized weakness in the limbs and biochemical sometimes flooding the body when you have exertion crashes?

Anyone have any idea what this biochemical flooding might be?

Could I still end up having problems with muscles in my face, throat later?

I sometimes get an uncomfortable feeling under my arm on my torso that doesn't show anything on tests on my left side close to the back of my breast. Does that happen to anyone else?

What's ironic is my sister-in-law, her mother & brother, couple of children and a grandchild all have a form of MD called Myotonic Dystrophy. This took several years to figure out. Each generation down manifested earlier and more severely then the previous generations who manifested much later in life, and is past on thru the Matriarchal line. It was thought first possibly Wilson's disease. Then my husband's ex-wife after much misdiagnoses was finally diagnosed with MS. I'm so thankful to not have those but my empathy for them has further grown.

Is MG considered a form of MD? I understand in at least one hospital that the MD Association assisted patiences with MG.

Thank you for any responds & for reading my long post. ~Marr (like Mare horse)

[juliejayne]

According to the Medical Experts... MG is either top down... starts with the eyes and sometimes works down to the legs.(ACHr or MuSK) Or it is bottom up... starts with the legs and works up to the throat and eyes.(LEMS)

Listening to those who have it, it is clear that just about any combination is actually possible. Though many people with Ocular MG, go many years without it advancing further.