I am at the Mayo Clinic in MN. Saw Neuro yesterday and after talking to me for 20 minutes he did some basic test in office and told me I don't have MG.
He suggested that I had sleep apnea. He wants to do another emg. I asked if he looked at the reports from the ones I had (3) and he said no. MY Neuro who has been seeing me every 2 wks since Sept. has run so many tests and I brought them all with me. He Has been treating me for MG and I have had 3 rounds of IVIG in the last 3 months (5day-3day and 2day)
My last IVIG was 6 days ago. I asked the Mayo DR if the IVIG could alter his basic test (eye not drooping after I swear he did 3minute test) he says I don't know!
My Neuro had sent me for 2nd opinion in Dec to Loyola in Chicago and blood test came back positive for MG. Mestinon 3-4 times a day helps me. IVIG helps. Mayo Dr. says stop taking the meds. NOW WHAT ???

OMG! WTF?

I am so sorry, that must be so frustrating.

Remember "Doctor" is not synonymous with "all knowing."

I am so sorry you got this kind of treatment. I can't believe Mayo-Rochester neuros are still being such, well, you know.

Did he say if it would be a regular EMG or a SFEMG? And did he know that the Mestinon and IVIG would most likely make any tests look negative when they are probably positive? Duh. It would be like giving away free money for nothing. Or your insurance company's money.

You have a positive MG antibody and both Mestinon and IVIG work. And this doctor says to stop taking all meds without looking at your records or waiting for any test results?! Um, I believe that's malpractice, not to mention damn dangerous.

The problem with Mayo—much of the time but not always—is that they are the definition of doctors acting like gods. They do not respect the opinion of doctors from other institutions. They need to have the final say on all things. Believe me, I know that personally.

Is the neuro you saw there an MG expert? If you want to PM me to talk about it in private, feel free. There are residents now who are seeing MG patients and acting as if they know it all. They are still being trained as neurologists, even though they are internists and have gone through the neurology specialty education.

I think you might need to ask to see Dr. Harper (Mayo), unless he's the one you saw. He is an expert.

I don't want to upset you any more than you probably are. So what was the reason for going to Mayo? Sometimes, too much doctoring is a bad thing.

In MN, many "regular" neuros defer to Mayo. It's as if they can't make up their mind about MG on their own.

Do not stop taking your meds. The Mayo doctor did not prescribe them and does not have the authority (god complex) to tell you to stop them.

What can I do to help?


Annie

ugh, I am so sorry!! Yes, as Bipedal said - Dr's are just people, they do not know everything... in fact I have met a lot that don't know enough!

In my opinion - of course IVIG would affect your results - I had my repetitive stim 10 days after IVIG, and they said yes, my muscles are currently acting like they act on IVIG- which is almost normal.. therefore the tests will reflect how the muscles are acting at that time they are tested..Makes it hard when you cant really survive well without treatment, but still need to get tested...


I hope the rest of your visit goes better, good luck and keep us updated

In case some more abstract principles are helpful:

My understanding was or is that all physicians are taught that a patient isn't supposed to discontinue a medicine because signs and symptoms are mitigated -- or even absent -- ignoring some kind of remission, the patient will still have the disease and just be untreated.

So I wonder -- when one of the doctors of the ilk you saw actually does prescribe Mestinon and advocate for IVIG, does he specifically expect that ptosis and weakness will remain or only diminish slightly and that his treatment will therefore have been proper?

It's a better idea to use treatment as early as possible in a disease and use it especially when the treatment works by one measure or another. One might otherwise suspect, in seeing a case like this, that the physician is really only giving Mestinon to patients with Bell's Palsy. Before going to bed at night, he may look in the mirror with a self-satisfied smile thinking he's a genius but his patients are probably thinking something else entirely.

It's maddening that the general principle in medicine is seemingly abandoned by some (too many) physicians who are supposed to treat MG and I always rack my brains to try to figure out why. I never come up with an answer. The thought that one or more physicians might defer to another who has abandoned a standard principle of treatment seems to me to be medically dangerous.

Oh Dear Lord I am so very sorry. This seems to an an unfortunate trend. I am beyond perplexed as to why so many dr assume this posture? Is part of it bc the other NM diseases they see like ALS skew their whole perception of things? I had a very similar exp at Johns Hopkins and I definitely wanted to scream, punch and hit?!!!

Guess where I am going mid April? You guessed it. Now I am rethinking things.

Hang in there!

PS reminds me, too, of when I saw a new rheum. I had been on high dose pred for 4 months at our first visit and she was like, "well aside from moon face, you seem prefect". NO KIDDING I seem fine!!!! I'm on 60mg of pred!!!!!

Sheesh.

Sometimes when questioning my doctor's therapeutic choices, I half expect him to reply: Who's the Barber Here?

Theodoric of York, the medieval barber, gives medical treatments and fine haircuts.

Theodoric of York Medieval Barber

This is a classic Steve Martin bit from the old SNL days.

-Mark-

I had a similar experience with the doctor gods at Emory last year. Try not to let it get you down.