Well, Mayo most certainly does take referrals! It usually has to be a neurologist referring you to a MG expert there.

As far as the winter in MN, it's not that bad at the moment. There are a few hotels that are connected underground to Mayo, so that you don't have to go outside to get to the clinic. They also have a service whereby you can be wheeled to your appts., in case you cannot walk very far.

I didn't want to assume what you meant about being steroid resistant. Are there any drugs you are on now that suppress the immune system? Steroids aren't the only ones that do that.

What were your exact B12 numbers? People can still not have B12 getting to their tissues and have so-called normal test results. Do you have fatigue that doesn't fluctuate or numbness/tingling in the face, feet, or hands?

You can easily tell the difference between Crohn's and MG. MG weakness fluctuates, so if your swallow issues are fluctuating, then it's probably the MG.

Was the PFT you had a handheld version? Or were you in a "booth?" Regular PFTs might not be sufficient or revealing enough for those with MG. MIP and MEP are specific tests they do for someone who is suspected of having a neuromuscular disease. AND, it's important to know ALL of the numbers they get, not only the highest, because MIP or MEP can show if you are becoming worse the more you breathe.

AND a month ago means nothing for your MG RIGHT NOW. MG fluctuates and if you are having a hard time breathing right now, they should be repeated right now.

You can still do some exercises, but not for long and not with heavy weights! And I still think you should wait until you see a neuro, but that's my opinion. You don't want to risk a crisis right now. The worse MG gets, the longer it takes to recover from it.

Is there a pool at your gym? Doing very simple exercises in a pool might be okay right now. Most neuros recommend a pool (if it's not too hot) for MGers. Of course, not if they aren't stable, however!

Only a neurologist can tell you for sure what your test means. They should be highly suspicious of you having MG, though.

Take it easy!!!

Annie