Which is the better choice when the best doctors in Baltimore are stumped? My MG expert has finally gotten the strength component under control for the most part. I still have constant eye problems, but its not consistent with MG...I'm thinking that that's due to either SPS or another undiagnosed disorder.

My walking continues to get worse, I'm afraid its only a matter of time before I'm bedridden, even though I struggle to get to work every day (and take flack from my parents about how late I run), but they say my strength is good. There's a constant tightness in my muscles, but its not the rigidity that the spasticity expert says he sees with SPS normally--for instance I can drive stick, but I can't get up and walk. To be fair he's only seen a few cases--he mostly works with spinal cord injury, but there aren't that many cases to see. He said he's pretty much stumped and wants to consult with the MG expert on the next step. Also, every time he increases my muscle relaxants, it helps for about 2 weeks and then my body either adjusts so I just end up with more side effects and no benefits. He said there should be a dose that's high enough that my body can't adapt, but is reluctant to keep increasing due to the side effects.

In the meantime, my neuro has me on enough meds to destroy my immune system and I'm not seeing the benefit (I did get help from about 60 - 70 mg of prednisone, but after about a year she said she couldn't justify leaving me at that level and lowered me back to 35--which is when the walking went way downhill, and I'm thinking it should be increased again).

So, now I'm at an impasse. My parents say I need to give my current doctors more time--I've given them three years and I don't think I have that much time left to give them. I realize I'll still be working with them when consulting with either clinic, but I think I need to consult with one of these clinics.

Mayo would be my first choice due to their team approach and the fact that they start from scratch and redo everything in case somethings been missed. The problem is its hard to book a flight when they can't give a definite amount of time their tests and consults will take. Its about a 2000 mile drive, which I suppose I could do, though.

Cleveland would be better because its closer, but they don't seem to use the same approach. They set me up with a neuro-muscular expert and said its one consult, but he may want me to stay a few days for tests. I've looked up the doctor's history and he looks good--he was trained in China as what appears to be a neuro-cardiologist based on his publications. When he came to the states, he retrained at UPenn and Ohio in neuro-muscular. Except from there he spent several years in Allentown before fairly recently joining Cleveland clinic. I'm not questioning that he's a good doctor, I'm just thinking that adding one more expert to the equation at this point is adding another cook to the kitchen and I can't imagine that many cases of SPS passed through Allentown, even if he has a clinical interest in it (he could have treated it in China. though).

Sorry for the length of this, but everything's gotten so complicated, I'm tired of being sick, I'm tired in general and I want to be able to keep working rather than being forced into a medical retirement. Any advice would be helpful at this point. Thanks.