It was Dr Howard at UNC. He is supposed to be a leading MG expert.

I actually find that hysterical. I saw him twice. One SFEMG was negative, one was borderline. Yeah, borderline. I had AChR modulating antibodies too, which a small percentage of MG patients have. Some have binding only, some modulating only and some with both.

MG is a clinical, not psychological, diagnosis that is backed up, not backed down, with tests. Negative SFEMG's don't necessarily prove you don't have MG. A negative doesn't prove a positive. She should get a muscle biopsy at Johns Hopkins if she continues to show signs of MG.

If your sister has any breathing issues, she should see a pulmonologist for an evaluation. If she indeed does have MG, as I do, then she needs to be careful.

Sorry, didn't mean to get off topic. I hope your IVIG continues to make you feel better.

Annie

Annie I just talked to my sister and she was floored by what you said. So who and how were you dx'ed? Her doctor today talked about sending her to Duke.
You are a sweetheart
Mike

Duke would be fine but they tend to give patients to residents and not "real" doctors. Residents are doctors too but sometimes they act like know-it-all's before knowing it all, which they never can. She has to be referred by someone. Maybe Tyson can give you the name of the doctor he saw and liked.

I was diagnosed ten years ago (yesterday actually) by a doctor in Florida who is an MG expert and MDA Director. Very highly regarded. He doesn't do SFEMG's anymore so I went to Dr. Howard to have it done. My story is long and complicated. I had modulating antibodies that were kept from me for seven years. Yeah, real nice. I have had MG my entire life. Again, long story. It would be easier to send you a copy of my book, if it ever gets published, than to write it here.

My clinical exam is classic MG. Every single thing about it. My breathing tests are typical MG. My MG crisis was typical. My Tensilon test was highly positive, after only 2 mg. of it (they can give up to 10 mg.). I have photographs clearly showing my entire face drooping and then one after I had steroids that makes me look like I had a facelift. Scary.

We MGers who don't have "scream in your face MG" may need to do more documenting like that. And don't forget that antibody tests come and go as far as being positive. My modulating antibodies are either in the range or above. I am on Flovent, so tests may not be accurate since steroids reduce the immune response and, therefore, signs of the disease.

A second opinion is a good idea but you need to consider a couple of things first. Seeing more than one doctor might be seen as "doctor hopping or shopping," meaning a patient is trying to find a doctor who will confirm something that isn't there. As if. Be sure the doctor you go to for the 2nd opinion has a lot of experience. It might even be a good idea to consider seeing the doctor that Stellatum/Abby saw in Boston. Maybe after all that snow melts.

If Dr. Howard only did the SFEMG and not a thorough clinical exam, then his conclusions are all based only on a negative test. Oh if only MG were so simple.

So one MG test was positive and the other was negative. Why is the negative one the "true" one and the positive one "discarded?" Not very scientific. Why neurologists do this is completely silly and is based on them thinking that the SFEMG is somehow infallible. Like doctors are. Trends in tests are important too. Does she have copies of all of her test results?

What I really find scary, and maddening, is that someone with MG can have their very life threatened, so to ignore signs of a disease like MG, in my opinion, is not only dangerous but unethical. Nope, I'm not calling Dr. Howard unethical. Not at all. He ran a test and came to conclusions that he is highly qualified to do. But you have to take in ALL of the facts with MG.

I hope she gets it all figured out. Let me know if I can help.

Annie

I'm sure my sister will read this in the morning and I will let you know if she has questions.
Thanks
Mike

The great thing about this guy (send me a private message for his name) is that I am seronegative (antibody tests negative) and had previously had two SFEMGs: one "borderline" and one mildly abnormal, but not (according to the neurologist who did it) abnormal enough to indicate MG. This doctor in Boston specializes in occular myasthenia, but he saw me even though I have only very mild eye symptoms. He did a different kind of SFEMG (stimulated SFEMG--means he used pulses of electricity to make the muscles twitch instead of asking me to clench them), and he did it on my face. To him the test was clearly positive, and I am now diagnosed.

He also said he saw things about my eyes that he's only seen in MG patients, specifically "Cogan's lid twitch." This is remarkable especially because I don't have ptosis.

I don't know if your sister is close to Boston, but if you could get to him, he sounds like he'd be helpful.

Abby

Abby thanks for the offer I'll see what my sister says. She is really discouraged with this whole deal. She has a hard time understanding why these doctors can't find what is wrong with her. I tried to explain to her that it is a rare disease and doctors just don't have a grip on it. In my case the trearments are just as bad. It is all trial and error.
Mike

I have now completed 4 treatments. I have one more next week. The neuro spread them out over a 3 week period. All treatments went well without any reactions.

Now the bad news. These treatments have not done a thing for my vision or muscle weakness. Matter of fact I now am starting to have problems with my neck. I'm not sure what the next course of treatment will be.

Update on my sister. She is now in denial. She is a very stuborn lady. I guess we gave her news she didn't want to hear. I'm sure she was convinced she was clear of MG when her tests came back negative.
Mike

Sorry to hear your news. Maybe there will be a cumulative effect (?) - I would hope that would be the case for you.

Ditto on what Sue said. I don't have any experience with IVIG, but even if I did I do know that everyone can react a bit differently.

What's the neck issue? More weakness? Have you backed off of Mestinon to see if you don't need as much now that you've had IVIG? If IVIG improves your MG, then taking too much Mestinon would make you "seem" like you are worse when you are indeed better. Too much Mestinon and you get weaker. Don't forget that. How are you between doses of Mestinon?

Annie