Quote:
Originally Posted by catie
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
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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.