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.

I didn't look at Cleveland, so I can't speak for them, but I opted to visit Mayo for treatment after getting an initial diagnosis in Las Vegas. I found the approach they took to be exactly what I was looking for. I had an appointment with a neurologist who specializes in MG and spent close to 2 hours with her discussing my history, the disease and performing a physical exam. That was followed up with additional testing the following two days, including a follow-up appointment with the neurologist and a surgical consult.

Flights can be tricky, however, just because you get scheduled for something doesn't mean you end up having to go. The doctor wanted me to see a neuro-opthalmologist, but the appointment couldn't be done until a couple weeks later, so I wasn't able to do it. I'm sure some of it will be dependent on the complexity of your disease, but I was in and out in 3 days. If you give yourself a week, I would think you'd be able to get quite a bit of testing/appointments in. You may even end up with extra time, like I did, but better to plan for a bit too much.

Good luck!

Thanks. When I originally made the appointment last year, they said to plan on at least seven days due to the complexity...they also were willing to see me within two weeks after telling me it would be several months. My doctor talked me out of it, though, and said to see the spasticity expert here and see the results of the thymectomy first. Its been about six months now and I'm just getting worse. I think I'll switch to Mayo, though. They know MG and originally came up with SPS.

My visit to Mayo was similar to what Hajile99 described. I had an initial evaluation by a neuroophthalmologist and a mg neurologist the beginning of the week. Then a bunch of different tests that were scheduled during the week. I had a follow up appt. w/the neuromuscular specialist later that week. She wanted another test which Mayo was able to schedule me for within several hrs so that I could catch my return flight on Thursday night. They were very accommodating. The MG specialist continued to consult with my primary to start treatment back home.

I was able to get an appointment within about 2 weeks of Mayo getting the referral from my PCP. I hope things go well for you.

Cate

For my own DX I chose Mayo. As far as dianostic ability they are about the best. You get put through the ringer, but they get down to the bottom of your problem one way or another. Staff was wonderful and so were the doctors I saw. You are seen with a teem of doctors from different areas of medicine. I truely wish you all the best in what ever decision you make. ginnie

Mayo can be helpful but they can also be utterly, well, useless. I'm glad some of you guys had a great experience but that isn't always the case. I don't "agree" with the course of action that Cleveland outlined. Yes, Mayo sets you up with one "primary" doctor but can and will toss you all over the place for help from other doctors if necessary.

Choose what you believe is best for you. You don't need to add the stress of traveling far but you also don't want to repeat doctoring over and over again if Cleveland doesn't get you what you need. I hope wherever you go that you can try to have someone go with you.

You have a complex health situation and do need more help. I hope the doctor who refers you will make it clear that you might need more than a neurology consult while there. They need to look at your entire health picture to know what's going on and what you can do about it.

I really hope you can figure out what will work to make you better. At some point, you might have to come to the acceptance that what you're going through completely sucks and there might not be more or better treatments. I don't think you've been evaluated thoroughly enough yet to come to any conclusions yet, however. IMO.

Only you can decide what's best for you. You deserve to have the best doctoring possible.


Annie

Did you look int John Hopkins, they do a lot of research for immune diseases including MG. I have also read some research from U of Maryland on MG. Might want to explore online. Just a thought. Be well.
Al

UMD is where I currently go, and they are great for MG...they've gotten everything under control except my eyes in terms of strength, but I think my eyes may be SPS related. There's not many places to go where they have SPS experts since its so rare.

Hopkins has an SPS expert on staff, but she's currently in Oxford because her NIH funding ran out and the UK apparently cares are rare diseases.

In the end, I decided to go the Mayo route. I could have gotten into Cleveland next week, but it would have been with their newest doctor, who switched from neuro-cardiology to neuro-muscular when he moved to the states and I'm already seeing two experienced neuro-muscular doctors so it just didn't seem like the right fit.

I'm sure he would have been an excellent doctor. Someone that can learn Neuro-cardiology in China and then pick up neuro-muscular at UPenn has so be smart, but I just didn't feel comfortable. Especially since he spent the last few years in Allentown rather than a major research center.

Mayo set me up with the doctor who's authored most of their studies on SPS, the only catch is that it'll take a couple months to get in. Last time they called back with a cancellation in two week, maybe I'll get lucky again. The MG expert I'm seeing thought that the spasticity expert she works with could help and wanted me to see him first so I canceled my original appointment, but he works more with spinal cord injury and admitted that I didn't fit the few cases of SPS he's seen. I figured that was my cue to find someone more specialized. I don't think I lost much as they would have tried his approach first anywhow. Now I just have to decide whether to fly into Minneapolis and rent a car or drive out to Rochester from here.

You could look at flying into Rochester, as well, although I found it to be a way more expensive than flying into Minneapolis.

And if you don't feel like driving from Minneapolis to Rochester, there are shuttle options. Both of my trips to Minneapolis, I took the Rochester Shuttle service for $50 round-trip. They pick-up at the airport and will drop you off at any of the Rochester-area hotels. As long as you reserve a hotel close to Mayo, you can get away without a car.

Adam

Mayo clinic also has listings of various homes, that rent out rooms at a much more reasonable rate than hotels. This is what I did, and it was wonderful to be in a home environment while I went through all the tests. The patient advocasy office at Mayo can give you some information on this if you want it. I sure hope all works out well for you. ginnie bedroom and private bath....