If the bloodwork all turns out negative, the EMG doesn't really show anything, but you have all of the symptoms, fit the descriptions to a "T", and mestinon works miracles against them,

Is it MG, or is there something else that mestinon also works on, or what?
Or, once all the results are in with nothing on paper to show for it, will the doctors say it's not mg and take away my miracle drug and send me out the door?

Dear winic1,

This is the situation I am in also. Even though I've had tests, all of them have been negative. My symptoms seem very much like myasthenia gravis. Mestinon works for me, and so does IVIG. It is tough without the positive results to tests, which doctors really like to get. However, if you have good doctors on your side, hopefully they will still be willing to treat you anyway. Mestinon is a pretty safe drug. If it is helping you and you are tolerating it okay, then hopefully your doctor will be willing to continue prescribing it. In my case, I kept ending up in the ER and ICU with severe breathing difficulties and weakness, which seemed a lot like a myasthenic crisis. It was scaring my doctors (and me). So they recognize that, even without a formal diagnosis, I need some sort of ongoing treatment. It is a difficult thing, though, and having the right doctors really helps. I hope your doctor will keep prescribing Mestinon for you. Thinking of you.

Take care,
Erin

yeah, it's that "good doctor" part that's scaring me. Almost no such thing around here. My ophthalmologist diagnosed me with MG more than FIVE YEARS ago, but without a positive AChR test, no one else would do anything about it (not even run a further test for MuSK or anything).

And, going back to when I first had clear, severe MG symptoms, it was SIXTEEN years ago, when I was pregnant with my daughter, but MG never even occurred to anyone, and I saw all kinds of specialists for all kinds of things as they tried to figure out what was wrong with me. It was so bad, by the time I microwaved my lunch and got it to a table, I was too weak to lift my arms and eat it. I would just sit there, arms hanging limp at my sides, staring at my food, until I recovered from the exertion of getting it warmed up. I could not stand and talk at the same time, if I was standing, I'd have to heave a giant breath between every two words ["Hey Boss {big gasp} Do you {big gasp} want me to {biiiiig gasp} include the {big gasp} chemical analysis {biiiiiiig gasp, twice} in the re-{nope, not gonna make it, gasp again} -port?"] That bad, if I was standing. Four to six words between breaths if sitting. And no one ever figured it out.

Hoping this new neurologist, who gave me the mestinon despite indicating she didn't think it would do anything, sticks with it now that it so clearly works. I think of it as my miracle pills. Ran into an acquaintance I hadn't talked to in months, she said she's seen me walking the dog and I look so much better than I used to! The nurse who took me down the hallway to the exam room at my gp asked, "I know it's been a while since I saw you, but are you walking better?" They see a couple hundred patients a day there! And she remembered me because I've been so pathetically shuffling along for so long.

"Good" and "Doctor" are two words you rarely put together around here.
Is why I'm afraid for my "miracle pills".

Hopefully your current neurologist will be a good match for you, and continue to prescribe the Mestinon. I'm so glad it's helping you. Do you still see the same ophthalmologist? If so, and you need more advice about doctors, you could try talking with your ophthalmologist. I've found that sometimes if you have one supportive, helpful doctor, that's sometimes a good place to ask for suggestions about other doctors to see. It's sometimes helpful to ask doctors in other specialties if you like them and they are good doctors...if you see a gastroenterologist or pulmonologist you like, for instance, try asking them. They might have good ideas about what neurologists are good in your area, too. That's how I've found my best doctors.

Still sending good wishes your way,
Erin

Wini, listen to Erin; she is giving you some good advice.

I never test positive. Yet, I respond to Mestinon, "had" been diagnosed with Bells Palsy a couple of times, weaken nerves, and have a prominent thymus.

I know this is a tricky disorder, so I wanted to know if race had a role in this. I'm black.

What I discovered as the reason why I never test positive is because 75% of black ocular MG patients were seronegative and 68% of white ocular MG patients were positive in this one study I read.

Now, if I didn't have ocular MG. (The droopy eye was temporary for me. I do have weak eye muscles. However, the typical MG droopy eye only lasted for maybe 2 or 3 months out of my life) I probably would have stood a better chance of showing up positive.

Today, the neurologists -- there were 8 of them -- were split in the middle.
I had every test in the book, and I went back to the older neuro who told me right off the bat that I had MG. He just took one look at me and ordered up some Mestinon. (He was the 2nd doc to tell me. The first one I couldn't understand, because his accent was too thick. Plus, he never gave me anything for it, but something to regenerate my nerves.)

Over the years. . .

Listening to other docs and my own doubts about having the disorder took me on a whirlwind discovery of nothing but seronegative MG.

I went back to the 2nd neuro when my symptoms were worse, and he upped my mestinone. Since, he is about to retire, he referred me to a doctor. She is young but very knowledgeable of MG. She told me that I can pretty much tailor the dosage to how my body feels at the moment.

Dear Poetist,

I'm sorry you are going through this, too. It's even more difficult when there is the concern that race may play a part in getting a diagnosis. I'm thankful you had the one neurologist who has supported you, and there is another one who is stepping in now that the first neurologist is about to retire.

I have a hunch that, one day, there will be more tests to check on different variations of MG that we can't detect right now. Some of us who are sero-negative right now might show up as positive later. That's my guess. For the meantime, we need some brave doctors like you found, and like I've been fortunate to find, too. Please hang in there and take good care of yourself! I hope Winic1 is doing okay, the one who started this thread. I send good wishes.

Take care,
Erin

No, not race, as I'm white. Something worse--I'm female.
And you know how we are overly sensitive and delicate and subject to our overwrought sensibilities and suffer from things like The Vapors.
You know how many times I was told to go take a walk, I'd feel better?
Well, that's the problem, doc, I don't. I don't feel better. I feel like collapsing. I can't breathe. I can't make it up the three steps into the house after a walk.
One doc who told me that, I asked him, well, if I go up a flight of stairs twice a day, every day, will it get easier? He said yes. I said, well, I've been doing that 5 days a week for a year and a half already, as my son's classroom is on the second floor and I have to deliver him and pick him up every day, and it still isn't any easier. It's worse. So what's wrong?
He changed the subject and wouldn't answer and wouldn't address it.

Us women. We're so difficult to deal with.

I think you're right, when they know what to test for, there will be fewer "seronegative" victims of this.

Still have my "miracle pills". Don't know if the doctor has decided she can officially call it MG for me yet. CT scan shows no thymoma, AChR test was negative. MuSK test is stalled by insurance hell, I have someone inside the company working on it, I expect that, if it ever gets approved, it'll be 2018 or 2019 by then.

Seeing a neuromuscular specialist at Yale next month, on request/referral from current neurologist. Have been to specialists at Yale in the past, for other problems. Not impressed, at all, with Yale. In fact, I believe I saw a neurologist there, for this, a few years ago (think he was with Yale, but not entirely sure, was in New Haven, tho) who started by promising me that he would figure out what was wrong, wouldn't just pass me off like so many before, then immediately passed me off to a Yale-associated Neuro-Ophthalmologist, big reputation, who was basically senile and spent the entire exam yelling at members of his office about me getting signed up for their patient portal (after interrupting the exam 5 times to call and yell at people about it, I still never got signed up) and yelling at me whenever I answered him because I didn't say, word for word, the exact same thing I'd written on the 8, yes EIGHT, pages of paperwork I'd had to fill in before going. They're just running on past reputation, at this point. But, maybe this new guy is worth something, time will tell.

Meanwhile, I still have my miracle pills, and I am using just 1/4 pill every three-four hours or so most of the time, 1/2 pill if I want to take a walk with the dog or am going to do something more strenuous, and am hoarding the extra pills I don't use (have prescription for 3 per day) against my fear that they will say, No blood test-No MG and take them away from me. Asked our little small-town pharmacist for extra moisture-oxygen absorbing capsules to put in the bottles to make sure they don't go bad. Pretty sad state of affairs when a patient has to hoard their medicine against the possibility that a doctor will rank a lab result higher than the patients successful response to it.

Hi winic1,

At least with me, my doctors have told me that Mestinon is a pretty safe drug. If it is really helping me, which they can clearly see, they are comfortable prescribing it for me even without the formal diagnosis of MG. Some other drugs which are used to treat MG, like prednisone, Imuran, or Cellcept, are much more complicated. Taking them can have benefits for you, but they also have concerns for patients long-term, and doctors usually have more issues with prescribing them. I would be willing to bet that your doctors will not take away the Mestinon since you are doing so much better when you take it.

I want to wish you well with the visit to see the doctor at Yale. I have seen doctors locally at university hospitals in California. Sometimes those visits have gone really well! Sometimes they haven't. I know you've had some really difficult experiences with doctors, but I'd encourage you to look at each visit as starting with a clean slate, if you can. Even if the last doctor(s) you saw at Yale were not so great, this new doctor might be totally different. This doctor might be kind, helpful, and could be a great part of your treatment team. You might be surprised! You have more information to give them now, too. You can tell them that Mestinon really helps you, and that is very useful information to have. Thinking of you and sending caring thoughts.

Take care,
Erin from California

Ugh! Looked up the doctor I am going to see, in 10 days, at Yale.
He looks okay.

But....the neurologist who passed me off to the neuro-ophthalmologist is still there, and the senile neuro-ophthalmologist is STILL listed, so evidently he has not retired yet.

So, the records are still there (senile guy's report was more errors than not, absolutely everything in it, even basic stuff like 'I started wearing glasses when I was seven or eight years old, in third grade' and he wrote that I was in 8th grade and 13 years old). And the people themselves are still there.

Nobody around here will contradict a colleague.

(At our local hospital/doctor system, they are forbidden to do so. Officially. You are not even allowed to see another doctor in the same department for a second opinion, they won't let you have the appointment. You have to bring in a documented diagnosis from an outside doctor before you can see a different local one, and be treated differently than the first one said. )

Yale is not owned by the same corporation as the three hospitals in my end of the state, but things are generally very similar in the area.

Have a growing feeling of dread that this is going to be a complete waste of my time and the day off from work my husband is taking to get me there.
Damn.