I went to my primary care physician today. I discussed concerns about worrying whether my neurologist really had much experience with MG.

He said, "Of course he does. Most neurologists treat 300 cases of this stuff a year. Myesthenia gravis is the bread and butter for neurologists."

Then he offered to refer me to a psychiatrist. I probably should have taken him up on it for placing my health in his hands. I have enough blood pressure drug prescriptions to last me for 6 months now. I probably should look into thinking about a new doctor. But I have no idea who to use.

That's awful. I'm sorry you're having to deal with what sounds like some rather unsupportive and impersonal doctors. I feel like I've been fortunate in the doctors I've had. Although that hasn't stopped me from seeking another opinion on the MG diagnosis and treatment options, especially after the surgeon referral I received from my neuro that I was less than pleased with. I never actually went to see the surgeon, but based on the history I found on the local medical board, I didn't think I should waste my time.

Anyways, maybe try checking out http://www.healthgrades.com . It's not foolproof, but at least it's a place to start, beyond asking your friends, family, coworkers, etc. Maybe you could also contact the Myasthenia Foundation and see if they have any suggestions on doctors in your area that they could recommend.

And can I also say that I totally empathize with your comment about taking the psychiatrist referral. I was "fighting" with my insurance company about approving an MRI (which I found out later didn't require approval...argh!) and on their telephone prompts asked if my inquiry was for medical, dental or mental. I was very tempted to select mental after having to deal with them.

Good luck and hope you can find some doctors that you like and feel are giving you the appropriate respect and treatments.

Adam

???????????

And I thought I have heard it all.

It seems to me that the bread and butter for neurologists is sending truly sick patients off to psychiatrists so that they can get some bread and butter too.

300 MG patients x 13,500 U.S. neurologists = 4,050,000 MG patients. Wow. With that many MG patients, it should be a snap to get more treatments and find a cure.

Where do doctors come up with this crap? A BS Math for Dummies book?

Why are you on so many BP drugs? Are you on more than one? And why? Did someone actually do a differential diagnosis to figure out why you have a high BP?

They all pull this nonsense at one point or another. Just ignore him.


Annie

When I was diagnosed with MG. my Dr was so was amazing he said I was his first patient with it as it became severe he saw me every month after the first year my Neurologist said I no longer had MG my Dr got me another Nuro
I then had to move and change Drs my new Dr was useless so I had to find another Dr who has been quite good then last month my Nuro decided that I don't have MG but CFS how that hurt
You have every right to have concerns and for your Dr to say that shame on him

By "enough" blood pressure medicine, I mean enough refills to last me. I am taking Coreg SR which is considered a bad plan with MG. Without it, I won't be around long. My pressures without drugs go way over 200/100.

Thanks for the laugh. You are so right! Find the doctor that you're comfortable with!

Celeste, I don't mean to pry but did the doctors every figure out WHY you had such a high BP? I know it's easier just to throw a drug at a patient but what if the cause is treatable?

One cause of a high BP is renal artery stenosis. There are so many others.

http://www.icsi.org/hypertension_4/h...eatment_4.html

http://www.aafp.org/afp/2010/1215/p1471.html

Did they ever figure out if it's essential or secondary hypertension? Could you have an endocrine issue causing it?

Just trying to be helpful.


Annie

Nobody has found out why I have such high blood pressure. The one doctor that tried for a while decided that it was due to sleep problems and put me on so many drugs that I totally went psycho. Interesting note, if my blood pressure is down, I don't have insomnia or nightmares. They got the chicken and the egg thing backwards.

southblues

As for the comment by your primary care doctor - WOW - that is a very - perplexing comment. Perhaps your primary care doctor has MG mixed up with MS ?

One time my gastroenterologist asked me how my multiple sclerosis was doing. I told her I had myasthenia gravis. She apologized and said she had read her "G" as an "S" - (in her medical shorthand).

Whoops. (I said to myself............)

I hope you can find physician(s) whom you have faith in.