At the Mayo Clinic ??????
 

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?

:hug:
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!
:grouphug:

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.

Was this the guy???
 

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.

I wish I would've been more assertive with neurologists early on, but I wasn't. Here are some things I might've asked or said. I hope it helps.


You've told me what you DON'T think is causing my ptosis and weakness, but you haven't said what you think MIGHT BE causing those things.

Sleep apnea doesn't cause ptosis or generalized weakness, but MG can cause sleep apnea or hypoxemia.

What other disease shows a dramatic improvement with Mestinon and IVIG? Are you going to test for that?

How can a patient test positive on an AChR antibody test and not have MG? What else causes a positive test result?

How can you not look at test results and doctor notes—without seeing any new test results—and declare that I don't have MG? Is that scientific? Is it objective?

Do you have x-ray vision? Can you "see" the neuromuscular junction? (There you go, HT, a clarification!) I know, that one is a bit too snarky, but there was an occasion that I wish I would've said that!

If my eyelids are already at the weakest they're going to get at this time, there might not be any change with an upward gaze test, right?

Are you an MG expert? If the answer is, "No" . . . you might say, "I'd like to see an expert, please. Is there one here?"

How many MG patients have you seen?

Wouldn't an EMG or a SFEMG look negative when someone is on the drugs that improve the autoimmune process that is causing weakness?

Why would I want to pay for a test that would most likely be negative?

Is there a reason you don't trust what my neurologist has written or done to evaluate/diagnose MG?

Do you not trust what I am telling you?


Sometimes it's hard to be assertive while you aren't feeling well, and especially when the doctor is being so absolute and contrary.

I hope things are going better.

Annie

Annie-

Thank u!! That list is all sorts of amazing. I'm super assertive but this is a nice, succinct, utilitarian list that doesn't allow them to just write us off. I'm dealing with this w sjogrens now despite being very symptomatic and w low c4, high rf quant but neg for the traditional sjo markers.

If they would only appreciate the fact that it's not like we are sitting around dying to be misdx. We all want a proper dx w the best treatment possible. So if this isn't SJO then is it lupus, etc. and if the other poster doesn't have MG then what?!

Amen to your list! Ill be using it.

:winky:

You can see it with electron microscopy and that has been the case for years.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2229756/

http://www.ncbi.nlm.nih.gov/pubmed/8818976

Even better:

http://www.neuro.fsu.edu/~dfadool/Rose1.pdf

I'd ask the question with absolute enthusiasm and tell the doctor to look at it if he hadn't. :winky:

There needs to be a youtube video showing how the NMJ in an MG patient functions with and without Mestinon or an immunosuppressant (obviously from that article, it would need to be created from pictures). Maybe that will be uploaded one day ... would get the doctor to "focus" -- draw his attention to what could happen at the receptor level when the meds are withdrawn instead of concentrating on "hey you don't have ptosis today."

I think I'd watch that video with rapt attention. (Ever get excited about a movie only to find out that it's an absolute bore? :Zzzz: )

I meant "see" it, as in x-ray vision. :cool:

I expected that you were probably saying that. . . just emphasizing that it's a good topic to bring up.

Hi,

You asked Annie who has a positive Achr treat and is told they don't have MG, well having been a member of DINET ( forum for Dysautonomia) for quite a few years now I will tell you I've seen plenty of posts from people saying they've had positive Achr tests and been told they don't have MG!

I'm wondering if these people have mild MG or some type of subtype of MG that also goes onto develop into dysautonomia. A lot of them despite being told they don't have it are treated with mestinon ( its used to boost upright blood pressure) and they find they do feel better on it less fatigued etc. However the doctors would argue that they feel better as their low blood pressure is being corrected and ignore the Achr test.

I've been treated as having MG, seronegative and then was sent to see a UK expert who said I didn't have MG. I was then left being allowed to take mestinon "as it made me feel better" they ignored the fact that my ptosis disappears when I take it and comes back when the dose wears off. They tell me I don't have MG and now say my ptosis is caused by low blood pressure - however I measured my blood pressure for a few months when I had ptosis and there is no link. I get ptosis when my bp is normal and when it is low! But what would I know I'm just a mere patient!

I hear and feel your frustration. Hopefully the Dr that is treating you with IVIG and mestinon won't be silly enough to stop these just because some big shot at the Mayo has ignored previous test results and thinks he knows better!

Rach x

Annie your list of statements is fabulous.. that should be poster sized!!! I asked my first neuro only one of those questions and she flipped me to an expert.. the question was..

How many other patients do you have with MG.. she didnt answer me but told me all about her MS patients and Lupos patients etc.. She did, however, help me find a fabulous doc who only treats MG.. so the issue was solved.

I did, however, have an issue with her nurse who asked me. "do you think this is from anxiety?" Needless to say.. lovely people who have no clue.

MG?me, I hope you're doing okay.

Annie