Hi Everyone, I'm sorry I haven't posted much. I've been sick and also, I'm feeling more and more like Alice in Wonderland trying to make sense of a crazy world. And then thinking I'm crazy.
Anyway, most of you have danced that dance, I'm sure.
So, since I was waiting to see the mg specialists and I already had an appointment I went to see a neurologist in another state who was sort of not-very-heartily-recommended-but-there's-not-much-around-here by the regional mg person. To make a long story short, I was hoping to get a full sf emg but, after two long and very tiring train trips, ended up getting an sf emg done only around my eye. Of course, it showed nothing. I say of course because I've come to accept that none of this is going to come easily for me. I don't know why nothing showed since I've gotten to the point where the whole upper right quadrant of my face is falling down and I look like I've had a stroke. But I did go into this with a "evidence for, not evidence against" sort of attitutde. Not that I'm convinced I have mg (almost though) but I'm not going to be not-convinced until I have some good explanations from a doc that I really have confidence in.
The neurologist also sent me over for some breathing tests which I did think for sure would show something, but showed nothing. That was a shocker. Because I was definitely having trouble breathing at that moment and I definitely have a lot of trouble breathing in general. I thought about it and thought about it (I know I sound like Winnie-the-Pooh and probably looked like it too
) and finally ended up getting a copy of the spirometry that was done when I was on mestinon and feeling great. Lo and behold, my normal numbers are way above the predicted numbers (122% on the one the neurologist was zeroing in on). So, for all you math geeks out there, I looked it up and the predicted values are based on a regression line and a normal curve of data. The bottom line is that my breathing would have to go down to 67% of my capacity before I would even begin to register as having any problems with my breathing. I'm still scratching my head over that test. I don't understand why they would use a standard which would guarantee that half the population would have their lung function overestimated and half would be underestimated. Maybe someone could explain it to me. Maybe it actually makes more sense than I can see from here.
Anyway, this is where it gets interested. The neuro said the 1 sf emg trumped the 2 positive antibody tests and, by the way, I can breath just fine and anyway mg symptoms don't wax and wane and mine do. So I decided that I would have to try to gather every single bit of evidence that I can't breath, I'm weak, my eyes are weak, everything. Some of it I can't prove, some of it maybe I can. So, along this line, I ordered an all night oxygen saturation meter because I was hoping to document that I suffocate all night long. And it worked!!! Oh my gosh, I was so excited! I got graphs and data showing my 02 saturation level falling to 68 at one point, in the 70's a dozen times and many, many times dropping to the low 80's, me struggling to wake up and breath and finally, about 45 seconds later pulling myself into the low 90's.
So, I took the graphs and reports to a neurologist who is a sleep specialists. I was bracing myself because so many times before I've gone into doctor's offices with a "see, I have positive antibodies!" type of evidence only to be shut down in short order. But this time the doctor was really surprised. He verified that, yes, that's bad. Here's the funny, sort of Alice In Wonderland thing: he could see my eye drooping and I told him about the antibodies and he kept saying, "I just don't understand why they haven't given you a firm diagnosis" and "it shouldn't be that hard, you have a drooping eye and positive antibodies". Of course I didn't have a good answer and it got to the point where I felt like he was irritated because I couldn't give him a good explanation as to why I hadn't been diagnosed! Ha! Someday I'll laugh about this. Actually, I'm laughing now. Life is so strange!
The good news is that he's going to work with me on this. I have a sleep study next week and then he's going to work with me to get a machine so I can at least stop suffocating at night. He explained something to me which I didn't know which is that we have a lot of muscles helping us breath even in sleep, except during REM where only the diaphragm is in use. I looked up some studies on mg and sleep apnea and sure enough found a study where 60% of myasthenics had sleep apnea during REM for just this reason. The problem is that I don't think you can differentiate between an mg cause and a normal case although maybe the sat. levels being so wacky can help. Does anyone have any experience with this?
So, I have a sleep neuro who thinks I have mg who is going to support my breathing with expensive machines (he mentioned an assisted breathing machine that costs $10,000!!!) when probably some all night mestinon and some prednisone would help more, but who can't otherwise help to diagnose me except to encourage me to see an mg specialist. Then I have neuros who could diagnose me but don't think I have mg. Meanwhile I'm wondering if this is all going to end in disaster before I can get to see a specialist.
I just really want to be told yes or no by a doctor I really have confidence in. And given an answer as to why I tested positive because if I don't have mg, I surely have something, and maybe the antibodies should point me to another autoimmune disease.
Sorry this is so long!!! I hoped to keep it short but I couldn't do it. I've been following everyone's stories and I'm sorry I haven't been commenting but I have been thinking of everyone.
Ally