If mestinon works, but it's not MG, then what is it?
 

Finally got to see the super-neurologist at Yale.
He said he doesn't seem to think it's MG, but he's re-running ALL the tests, including emg's, dang it, and then we'll see. Only, it will be well into September before it's done (long wait for appointments).
Insists I have to see yet another neuro-ophthalmologist (this will be number 4, tho in fairness #1 should not be counted because he was already senile when I saw him, and #2 and #3 were partners who just stopped communicating after my second visit, wouldn't answer me, wouldn't answer my doctor's calls, just never heard another word) because the just-an-ophthalmologist I have been seeing for over a decade couldn't POSSIBLY be treating me sufficiently.
Going to re-run thyroid stuff, again, going to re-run vitamin stuff, again, going to re-run rheumatoid arthritis and related stuff, again, even tho it has all been run more than once in the last 9 months, and I gave him all of the results. In the last 9 months I have been to orthopedists, 2 rheumatologists, cardiologist, endocrinologist, ENT, 4 different ophthalmologists (two my regular, 2 other specialties), GP, physical therapists, neurologist, and now super-specialist neurologist and new neuro-opthalmologist and I feel like a friggin' ball in a pinball machine. And for what----so far, nothing but getting flipped to more friggin' doctors who only flip me to others because no one wants to take responsibility for anything!

But, the mestinon WORKS. People who know me are amazed. Other people, who barely even know me, can even see the difference. It WORKS. I run into people I barely know, in town, and they say things like, "I see you out walking the dog, and you look REALLY GOOD! What's going on?!"
When my regular, must-be-insufficient-ophthalmologist first named MG, I read up on it and it wasn't, "well, that might be it", it was "YES!!!! THIS IS IT!!! This is EXACTLY it!!!!" But, the docs don't think so. But the mestinon works.

So, if it's not MG, then what the hell is it? What else does mestinon work on?

Because I am really not thrilled with being shoved down the rabbit hole , again, to ultimately end up with nothing, again....

Good, sounds like the doctor is being thorough.

What other disease state does Mestinon help? Oh, let's see . . . Mestinon is sometimes used to increase peristalsis. The drug can increase blood pressure in POTS. In some people, Mestinon temporarily (for maybe days or weeks) may help forms of ALS.

HOWEVER, Mestinon helps ONLY MG, LEMS, and some of the CMSs. Period. Of course, there's always the placebo effect.

I know how tiring and frustrating it is to not have answers. Now you have to wait a couple more months. BUT this guy sounds like he wants to figure this out for you. And that, "I don't think it's MG" thing has been said by so many doctors whose patients end up having MG.

This doc is lending you a hand OUT of the rabbit hole. Just trust what he is doing.

In the meantime, take it easy and enjoy life!

:grouphug:
Annie

Actually, this doctor sounded just like every other doctor I've been to for years, all excited about how he's going to figure this out and be the big hero, and NOT pass me on to anyone else. Same words I've heard so many times before. Including, "so...My job is to figure out if you have MG or not." (because I was referred from another doctor asking if it was MG.)

And then, none of the lab reports tell them what to diagnose.
And then, one of three things happen.
--They refer me off to someone else, not to return to them.
--I just never hear from them again. Won't return calls to my regular doctors, won't return calls to me, no messages, no reports, no nothing. Ask for records to be sent, the only clinical pages that come are a single sheet of their tiny, illegible, hand-scribbled notes, no write up, no nothing.
--They say, "Well, MY job was to decide if you have MG or not, and I say you don't." and that is the end of any discussion. (And if that's what happens this time, I swear I am going to say, "I thought your job was to HELP ME. But if you say it was only to decide if I have MG, then clearly you are working for Dr. X(who referred me) and you can get your payment from them." And then do my best to make them do that.) After all, what have I got to lose at that point, if I am being dismissed, again?

He just sounded EXACTLY like every other one before, especially when he said the "my job is to decide if you have MG" line. My only hope is that, since he is head of the department at Yale, he might just have a bit of pride and arrogance in that, that he won't want to lose. You just have no idea how many doctors I've been bounced through for so many things. Including one of this guy's underlings.

Sure, they look down the rabbit hole all friendly and concerned and helpful, stick out their hand offering to pull me up, then just about when my fingertips are touching theirs, shout "PSYCH!!!" and yank their hand back, walking away laughing.

So, i am still going to keep trying to find out for myself. Wouldn't be the first time I was the one to finally bring the right diagnosis to the doctors, or the second, or even the third, actually (and you should see the look on their faces when they finally realize I AM right)....my hoofbeats are not those of a horse, they're a rainbow-striped, half-checkered, flying unicorn from outer space. But most doctors around here have their head up their backside chanting "if it has hooves, it's a horse. if it has hooves, it's a horse. if it has hooves...."

Well, I am not this doctor. I certainly deserve more than this type of response.

You may want to see someone about how much anger you have toward these doctors. No matter the cause, anger is not healthy. Conversely, no patient deserves to not be taken seriously.

I wish you well in your efforts to find the truth.

Annie

ACHR numbers
 

What are you acetylcholine receptor antibody numbers?

negative. no numbers.

no further testing, like Musk or LRP4 done, still in insurance hell, for the last 8 months.....can't afford to pay for the tests, cannot get an answer from insurance on whether they will pay or not, and if so, how much, whether it will be in or out of network....nothing. Round and round and round we go, where it stops, nobody knows.....oh yeah, if they delay it long enough, I will be old and die and then they don't have to pay for me anymore. I'm pretty sure that's their plan.
And hey, at least the doctors will be able to correctly diagnose me then. They can't mess up "she's dead", can they?

How long ago did your symptoms first appear?

Can you get them to prescribe Mestinon?

If you can, the just keep taking it and make life adjustments until it goes into remission.