Saw my neuro doc today because of worsening symptoms and he is sending me to the Mayo in Jacksonville. My colonoscopy has been postponed until after diagnosis. I have altered my work schedule so I don't work 2 days in a row. I have to decide about cancelling a trip to Italy at the end of may. All refundable except airline ticket. Anyone have any experience with the Mayo?

I have experience with Mayo clinic. I went there for DX. It was an intense experience, as they do have you see a number of specialists, one right after the other. If you want a DX, that is indeed a good place to go. In my case they got to the bottom of the problem. I was there for about 4 days. The only thing I didn't like was the last day when they gave me the results. I was still in the hospital gown. I would have rather gotten dressed and felt more together to receive the not so good information. I have an auto immune problem and was referred to Columbia university medical center for years of a trial study.
I wish you all the best in going to Mayo clinic. Expect alot of tests. They were nice to me however, and I am sure they will be for you too. ginnie

The only thing that I've heard about Mayo, and I'm sure anyone who has the experience can correct me if I'm wrong, is that they do not treat seronegative patients. Thus, is going there, you might still not know for sure if you have it. But, again, it's what I've heard.

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

Hmmm... was one of these written by a ghostwriter? Or did I miss quotes or something else?

and from September of last year:



Sorry to remember these types of details about other people and ask the above question, but because of what would happen to me in Florida (some combination of ), I remember what people write and I'm curious ...

Well, one doesn't have to do with the other. Heat and humidity make my MG rapidly worse, no matter what the geographic location is.

What makes me feel energized is the large energy center, which is on the world energy grid, aka ley lines. There's also one in CA. It energized my SOUL. I wish it would've done the same for my muscles. Think of what a good night's sleep does for you versus a lack of it.

There are also places of "vortex" type energy, such as the zone of silence in Mexico. There is a LOT we don't know about our world.

Or maybe it was the fact that I love the beach, walking on the sand and eating grilled lobster. And that I tried not to go to FL unless it was in the cooler months!

Ghostwriters don't exist on this forum because you can't log in with another name, due to IP addresses, etc. Unless you get the okay to change your nom de plume. Good grief.

Does that adequately answer your persnickety questions?

Annie

(The real, the one, the only, who is always honest and way too worn out for this kind of . . . I'm not sure what. Cross-examination? Sheesh!)

Thanks for the great info everyone. I just ordered a sleep study type pulse ox.
Annie-My sister(RN) agrees with you about the overseas travel. My husband is still having a hard time with all this. He still thinks I can go. I hope Mayo calls and wants to make my appointment for the time we would be gone. My sister will come to Mayo wih me as well. She thinks my husband needs to be educated about myasthenic crisis and what to tell an ER doc. Any suggestions where to get info I could print for him to carry? This group is the best!

Sandy,
Everyone here has given you wonderful advice. I hope your visit to Mayo goes well.

I was seen there several years ago after 6+ years of symptoms. I had a positive experience and fortunately was given options for treatment. I am seronegative, EMG negative, though tensilon test was positive. Treatment recommendations were based off of this positive test and clinical symptoms. I feel that the recommendations were as aggressive as they would have been for someone who was seropositive (i.e., prednisone, IVIG, long-term immunosuppressant).

Had I not gone to Mayo I believe that I'd still be searching for answers today. I hope that your experience there is as positive as mine. Feel free to PM me if you have any specific questions.

Cate

I think explaining inability to do something because it makes you ill is like explaining color blindness. ("Oh hey, but you have to see exactly what I see -- and you call this color by the same name I do so you must have the same experience.")

Even just for heat, I found I had to say "I don't like ..." "I can't" all the time. I'd tell people that technically I "liked" or "wanted" to be in hot places but couldn't if both 1.) I had their attention for long enough and 2.)they might have the intellectual capacity to understand it. (That was rare).

I expected that this might be the distinction you were making. I posted because I can't talk like that and have people get it. I wondered if you deal with sharper people on a regular basis and hadn't been reduced to speaking in the way I must.

The ghostwriting comment was to make light of this distinction, be very silly, and elicit a laugh. Following up on my last post with this detailed explanation is a little more serious than I wanted to be but I feel bad that what I wrote could be interpreted in another manner.

With more specific reference to some of the issues in this thread, you can plug in "can't fly" for "can't be in the heat" above. That's another discussion I've had "fun" with through the years. I've found that people are even less likely to understand that flying can debilitate or kill you than that heat can.

(But yes, despite the fact that I get the distinction, if anyone writes that s/he loves flying -- and that s/he flew with O2 in another post, I may show up with a line or two )

I would recommend seeing a neuro-optomologist. I had faster results of MG going that route than through a neurologist. Also ask for a single fiber EMG, the diagnostic test for MG in seronegative patients.

Good luck
kathie