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Old 04-25-2013, 10:12 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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Sandy, I think that the worst thing you could do would be to go to a foreign country while you're still undiagnosed. What if you go into a crisis when you're there? I've had that trip over the Atlantic and it is NOT fun for someone with MG. My O2 saturation went into the 70's while up there in the plane.

Don't sweat Mayo. They will do everything they can to figure out what's going on. And they do know that seronegative does not mean no MG. They might not be as "aggressive" with treatments with seronegs but you are not doing well, whatever is going on. You need help pronto.

MG has 3 antibodies now, though only tests for 2: Acetylcholine Receptor Antibody, MuSK Antibody and LRP4 (no test available yet).

http://www.ncbi.nlm.nih.gov/pubmed/21814823

They can do pulmonary function tests, EMG/RNS/SFEMG, rerun a bunch of blood tests and even do their odd little tests like the "stair step" test to see how many times you can go up and down on two steps before you O2 tanks, your pulse goes too high or you fall over.

I hate to say this but I will anyway. Some Mayo neuros can be, well, arrogant. They often don't like intelligent and assertive patients. So try not to go in and tell them what you think is wrong with you. Just tell them your symptoms, when they began and how they progress (i.e., weaker legs when you go up stairs). Obviously share the sleep study results with them. If you've written down your symptoms, that might help too.

I hope it goes well. Rest as much as you can. If you have MG, a trip to Mayo can really wear you out. They do have people to wheel you around if you need that, so don't be shy about asking for it.

I don't know how you guys who have MG can live in Florida. My MG can't take heat/humidity.

Hang in there, Sandy. I'm sure things will go great at Mayo.

Annie
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"Thanks for this!" says:
ginnie (04-26-2013), sandy56 (04-26-2013)