Tyson, Redoing the SFEMG is not necessarily about doubting the diagnosis. When an MG patient is on as many meds as you are and is still weak, they have to figure out WHY. The SFEMG is the only "objective" way they can do that. Antibody tests fluctuate, so even if you were seropositive, it would not be a good test to run.

They should, however, run other tests. And ask more questions, like what have these drugs done to your body "systems?" You may need an endocrinology consult, to make sure that your adrenals are properly checked and attended to if you start to taper pred. Do not leave that kind of thing in the hands of a neurologist! It's not their specialty and they have no business overseeing something like that, no matter how good they are.

This exercising thing is a bit obsessive compulsive, don't you think? It's not sensible, that's for sure. You know what the outcome will be - you getting weaker - and yet you continue to do it. Do you want to feel worse? Because you know it makes you worse.

I think Dr. Howard is "overbooked" in general. He teaches, he does conferences, research and clinical. Oh, and advises students. Where you may need to go to discuss stem cell issues is Johns Hopkins.

It's important for your neurologist to make sure whether this is MG or something else neurological or, again, another body system issue. Pred, for example, gets rid of the good prostaglandins in your body and may be responsible for your pain issues. If you aren't supplementing properly, like with fish oil, then you aren't getting enough GOOD prostaglandins for your body to fight inflammation. And don't underestimate what food is doing to your body. I remember what food I ate while in college. You have to be more assertive with your choices. Other hormones may be "off" and should be checked too, including testosterone. Your immune system may be too suppressed and could be adversely affecting things like white or red blood cell production, platelets, inflammatory markers (fibrinogen, CRP, ESR), etc. You need someone who will look at the BIG picture and that is usually a very good internist who does that. And are you on any supplements that could be interfering with your drugs? Do your doctors - every single one of them - know everything you are taking?

You are expecting a lot from your body, so you need to make sure it's set up for success. You have MG, you know. There is a "finite" amount of anything you can do. It's hard not to think you are invincible at your age, so maybe pull back on a few things until you feel better.

The more drugs you take, the more your body is "assaulted." Your liver and kidneys have to work harder. Your heart may be taxed more. So many issues can come up and you need doctors to look at more than just the MG.

I've seen one too many people get sicker and die, not from disease but from drugs and not enough good doctoring. Staying healthy is the goal here, not only taming MG.

Yes, I'm being a bit harsh on you but it's meant with the best of intentions. Please understand that I'm dealing with an "end game" with my dog, possibly due to inadequate doctoring, and my view is a bit jaded right now.

Just get yourself to as many doctors as you need to figure out what is going on, BEFORE drug or procedure options are thrown at you. Know WHY first. I hope you will figure it all out so you can feel better.

Annie