Hi, Robin ...
Haven't quite figured out this "reply" system yet ... I posted a previous reply and I don't think it went through.
I've seen 6 neurologists! My symptoms started 26 months ago when I came out of open-heart surgery with slurred speech, very blurred vision that soon became double vision, too, & shortness of breath. Nine months later, I developed swallowing problems.
1st neurologist said it was a stroke during surgery. 2nd said it was Progressive Supranuclear Palsy! (That is related to Parkinson ... nothing like what I have.)
A year ago, the left side of my face froze up and I developed the "myasthenia snarl" when I tried to smile. This has eased up a bit and my expression is more normal now.
For six months, I could not tolerate certain odors (cinnamon) or spicy flavors, but that's gone away too. Also, my blurred vision has stabilized since last October, although it gets bad again when I'm tired ... but the double vision is just not going away. I may have to break down and get an eye patch for reading.
Went into respiratory arrest December 2007, with entubation in the hospital. Then saw a 3rd neurologist in January who said I had "classic Myasthenia Gravis" and there was "no way" it was ALS.
He prescribed mestinon, which immediately gave me a lot of energy and much more muscular strength. I was limp as a noodle one day, then started the mestinon and was carrying heavy boxes of books around all the next day. But it has not helped my other symptoms AT ALL. Except maybe my swallowing. It has improved a little in the past fewweeks.
Two months ago, in March, I went to a free MG Foundation clinic at a teaching hospital for consultation, and the first guy I saw (a resident) said it was not MG, it was ALS. Then his supervisor, a clinical professor, came in and said it was not ALS, and was "probably MG, but maybe something else was going on too." He said I had too much mobility for ALS.
Last week, I returned to the same clinic for an EMG test, and the neuro who did it (this was another new guy ... neuro #6) said it was ALS, "no ifs ands or buts." (His written report said they found denervation in 3 out of 10 sites they tested ... which is also consistent with MG. However, he was much more nuanced in the written report than he had been in the exam room.)
I will apparently be going to the UCLA neuromuscular clinic for further evaluation and management of my symptoms. All the tests necessary to eliminate MG have not been done, so maybe those will happen, or maybe #6 is so sure it's ALS he doesn't want to bother do them.
Anyway, the score is now 1 neurologist for stroke, 1 for PSP, 2 for ALS, 2 for MG. But I have a hunch it is ALS, because I have tongue fasciculations and (I think) some muscle loss in the tongue. You don't get either one with MG ... but especially, you don't lose muscle mass.
But as of today, the symptoms are still restricted to the area from my lungs up, although I get cramps in a finger on each hand occasionally. (That's probably a side effect of mestinon, which produces cramps) I still feel great, do treadmill 3x a week and Pilates once a week, drive (except when my eyesight gets too blurry), and am pretty active for a 72-year-old! Have lost 25 pounds since it all began, but have held my weight steady since January. My appetite is slowly improving, and I have learned some tricks for adding calories, using the correct head position when swallowing, etc.
Had lung function tests last week, and my lung capacity was well above average for my age/weight on most of the tests, so that is good news. Swallowing studies show I'm not aspirating liquids into my lungs, although I have to sip liquids very carefully.
Biggest problems remain really, really terrible speech, difficulty swallowing, and the double (sometimes blurred) vision. So we'll see what the next neuro says at the new clinic.
I find it is helping a lot to take it "one day at a time." One MINUTE at a time! When I start worrying about the future, I ask myself, "OK, but how are you doing right this very minute?" And I take inventory and usually, I'm in a good place, functioning pretty well and feeling OK.
But ... I am concerned about you, Robin, and your situation, and I hope you will get a sponsor soon, and find a home group where you are comfortable, and where you can let people get to know you and what you are dealing with. Perhaps a closed woman's group would help you open up and let people know you need help.
You don't need a sponsor for advice about the medical stuff, but to work with you on the steps in AA and in sharing very practical ways to get through difficult days. You have so much on your plate to deal with ... but you don't have to go through this alone!
Remember alcoholism is a killer disease, too. It is deadly serious, and should not be put on the back-burner. If you practice the steps, you'll find that the AA tools will work in every situation in your life: staying sober, coping with your husband, helping your children, your work, dealing with ALS, whatever life throws at you. So, "take action" and reach out.
And please, take good care of yourself!
Beth
(Sorry this is so long!)
