Hi Ally,
Who knows what the hold up is! Actually, I'm kind of a challenge because of some other influences.
As for the MG - I had a "rock solid" dx in 2004 by a neuro that is well respected for her dx abilities in her circles. Unfortunately, I have moved and my old treating neuro stopped taking my insurance, so here I go again.
I haven't had a droopy eye once at the neuro's - that's strike one!
This neuro tells me it's rare, but happens with MG.
I have generalized MG and my face/eyes/breathing are usually the last to get involved. Generalized is apparently a more rare form of MG, so not as many neuros have experience with it.
I am antibody negative for both the known antibodies. Another thing that puts me in the more "unusual" category.
I have symptoms that are definitely not MG - spasticity, hyperreflexive, progressive numbness and tingling amoung others, loss of vibration sense...
They have known since 2003 that there was a second condition, or possibly one condition that accounts for everything, but Mestinon definitely does help me, so that keeps the MG dx around.
The combination of my sx's looks just like MS, but they can't seem to get an MRI that shows the lesions, so in the past they have attributed my second set of sx's to spinal cord compression that I presumably had in 1996 when my first really serious bout happened. I question the cord compression now because there was so much argument between my neurosurgeon (didn't agree), my neuro at the time, my previous neuro at that time (he and my surgeon new each other well and discussed me apparently), and my second opinion surgeon. With the info I have now, I really wish one of them would have been smart enough to get a myelogram on me then to make sure. My MRI wasn't real conclusive due to metal in my neck from the 1st surgery causing "artifact" or obscuring the picture at that level.
Most recently, my newest neuro was able to find the severe weakness, but because I messed up and smoked AND drank coffee (I presume that's why) her EMG didn't pick up the decrements. I'm hoping my mistake will help prove out Annie's wonderful research into the effects of nicotine and caffein on EMG's for everyone in the future. If my SFEMG shows the problem, I'm going to take my 1st EMG (negative-smoked & coffee prior),
my 2nd EMG (after 24 hrs in the hospital, no smoking or coffee prior) that showed 76% decrement in one muscle group, and her EMG (again, smoked and caffein so no decrement) along with Annies research findings and plop them in my neuro's face.
She and the rest of the neuro community are of the belief that caffein and nicotine use don't affect the EMG on the peripheral nerves - I'm planning to show them otherwise with my mistake!
Back onto your experiences, though. You also had some run in with egotists it sounds like. At least yours put good notes in your file, though, even tho' they contradict how they spoke to you. I gained access to notes from my very 1st neuro to my PCP that flat out lied about what I had said about my mental state, that made me sound like an absolute raving nut!! All because I questioned his results on my 1st EMG, which I did because he seemed to be having a lot of trouble getting a baseline - kept reshocking me and telling his assistant "no, that's not what I need", then he finally told her "well, lets just go with this, I don't want to have to keep shocking her like this". Wouldn't that give you reason to question?
Anyway, it was all downhill from there with him and he put a very effective block on me after that. I had so much trouble getting anyone to even start a consultation without asking a bunch of psych questions first!
There's one letter that has been withheld from me (doesn't exist in anyone's file!!! except the 2nd opinion surgeon who said I had to get it from the source - my neuro surgeon) that caused my 2nd opinion surgeon to start my consult with a 1/2 hr. rant about how I better stop acting like this and my husband wouldn't put up with me for long, and that I was passive agressive! My husband and I sat there with our jaws dropping.
This rant was preceded with "I have here on my desk a letter from (my surgeon), and let me tell you something young lady!" After I quit responding trying to defend myself, he finally decided to do an exam and discovered a H response on me. Then he turned it around and said "these boys had better knock it off and get you taken care off". He was a much older surgeon that had actually trained my surgeon, but it was his comment "these boys" that made me realize the 1st egotist neuro was involved in that letter.
Anyway, I don't use that neuro surgeon anymore altho' he may have been right about the cause not being cord compression because I don't deal well with docs that forget their oath is to their patients not other docs!
Hope you have better luck in the future with your docs and dx. The link Annie gave us is going to be very valuable, to me at least, and I hope for you too. I put it my favs folder of ammunition
.
And forgive my rant here. I just get so frustrated with some of these doctors and the main reason I do is because of the conditioning that first neuro gave me as an intro to their community!
Be careful about pushing yourself. Once a set of muscles get fatigued enough, it can turn into a domino affect that's hard to stop, and can lead to crisis.
Talk to you soon.
