Alice,
How similar parts of your story sounds to mine. My first symptom that I noticed was actually double vision. The neuroophthalmologist I saw said it was definitely MG--he was quite sure, but then the antibody test and EMG came back negative--so he dropped the whole issue and basically said that there was no way I could have MG, unless is was just ocular. He said it was probably a congenital 4th nerve palsy.

I went about my life and just thought my heavy arms, legs, and double vision was part of aging. I even ended up in the ER with what was probably a MG exacerbation--extreme weakness, increase dbl vision. This resolved somewhat after resting in the ER all evening. Though sxs continued for 7 years before I was diagnosed by tensilon test and response to mestinon, I had the occasional neuro tell me that it probably was MG, but there was "no decent treatment" for it anyway. So no treatment is what I received until about 18 months ago.

I've had to retire b/c I was unable to work due to my double vision and unpredictable other symptoms. I do feel better since retiring, but I feel that I've lost a lot with the delay in treatment. I thought 7 years was a long time to wait for treatment--I can't imagine 20 years!
Cate

Ravenred,

The morphine problem is definitely part of my family history. I am allergic, had it twice for two days after my C-sections, fortunately just the usual rash and itching. My dad became totally intolerant, couldn't breathe well, and abdomen swelled which contributed to that problem. Despite a documented history of problems and a big sign he insisted be put on his bed, they gave him morphine in the OR for knee relacement, didn't tell him and he had the abdominal problem again and had an ileostomy for the rest of his life. Two years after the surgery, he was diagnosed with MG. So it seems narcotics are really out for us, and those people with the strange looks better not try to sneak one by us. A friend said the only medic alert he would wear was intubate for MG, maybe you could wear one that says respiratory collapse with morphine. nc

Cate,

There are similarities and differences in our stories.

My obscure symptoms gradually resolved on their own, and I had no MG symptoms (unless you think being extremely tired after working for 36 hours in the hospital, and then being with a 10 and a 3 year old who understandably want your full time and attention is an MG symptom).

They returned 15 years later (6 years ago).

The major similarity is that we both have normal EMGs, which some neurologists still believe can't be in MG. ( I say believe, because there is nothing in the medical literature to support this notion).
Such neurologists feel you have "tricked" them if you have very obvious clinical MG symptoms and a normal EMG.
They find it easier to believe that you deliberately (possibly sub-consciously) stop breathing, collapse in front of their eyes etc.
And some will have no problem showing you their resentment for "tricking" them like that.

This is beautifully (and sadly) described in Chloe Atkins' book.

I got out of bed one morning and fell flat on the floor. I thought my legs were asleep. That was my first sign too. However, when we looked back, I remembered being so sleepy. I slept all the time for about a week prior.

extreme stress is what "brought out" my MG.
When my son relapsed with cancer I had to spend many hours awake beside his bed and I got double vision so bad that I was being sick. Luckily I was in the area in down town Toronto where there are many world class hospitals. I remember getting the diagnoses and getting put on Mystinon and the symptoms, with some much needed rest, my vision got better but the double vision stayed to when I look on both sides of my vision. Now it is generalized.


randy