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Old 01-19-2017, 11:56 PM #1
winic1 winic1 is offline
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Default What if you never test positive?

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?
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Old 01-20-2017, 10:21 AM #2
ErinBear ErinBear is offline
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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
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Old 01-20-2017, 01:50 PM #3
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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".
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Old 01-21-2017, 12:41 AM #4
ErinBear ErinBear is offline
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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
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Old 02-18-2017, 03:16 AM #5
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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.
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Old 02-18-2017, 09:15 AM #6
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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
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Old 02-22-2017, 02:24 AM #7
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Quote:
Originally Posted by Poetist View Post
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.

Ov
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.
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Old 03-24-2017, 04:04 PM #8
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Default All tests negative but had mg

I know a woman who for 25 years, EVERY test she had for myasthenia gravis was negative. Then they took out her thymus gland. She said it was spitting out antibodies. Proof positive that she had myasthenia gravis.
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