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

Thanks all for the great suggestions. I have been able to talk with 2 people with MG in my area. They have been very helpful. Also special thanks to Annie. I am feeling better and better about all this. Now just have to wait for Mayo would call.
Sandy

I agree with Cait's (Kathy's) post about seeing a neuroophthalmologist

I had my first appointment at Mayo scheduled with the neuro-ophthalmologist and then had a neurology consult with a neuromuscular specialist later that day. The neuro-ophthalmologist is the one that performed the tensilon test. The fact that that test was positive really helped things to move along with the neurology appointment.

I hope your appointments go as smoothly.
Cate

One thing I learned through the process of getting diagnosed (I am also seronegative), is that waiting on a referral can make for a long wait. If you haven't, I would encourage you to call and check on how the referral is progressing. Things get lost and forgotten. Our emergency is not always their emergency.

I was very excited to see you were considering seeing Dr. Weiss as I have heard so many good things about him. Most notably his ability to see you quickly and his openness to LOOK at your signs and symptoms and diagnose you. Did you ever call him?

I have not called Dr Weiss's office yet but have been considering it. My insurance (Tricare) is very restricted and I would need the referral. I have talked to the office staff and they asure me it is moving along. I plan to call every day until it gets sent out. I started taking Huperzine A yesterday and it seems to help my breathing and weakness; not my ocular symptoms though. I have cut my work schedule down to 2 days a week as well. Thanks for all the support and good ideas. This is a stressful and exhausting process.

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 ...