nice to meet you

Hi Moshe!

So glad you made it over here!! You and Alice (not her real name for obvious reasons) will have lots to talk about!!!

(((HUGS)))
jana

Jana, This is the toughest subject for me. I had a few SFEMG's and no one had told me that the Advair I was taking could make everything look normal. Any steroid a person takes can make EMG's and antibody tests look completely normal. That's their job - to suppress the immune system. Is your friend on any other drugs that would interfere with a SFEMG?

Plus, they do need to test clinically weak muscles. AND the person doing the test needs to be VERY good at it. Often it's done by those doctors who are training to do it.

The congenital myasthenic syndromes, the ones where a person has less acetylcholine (there are some where they have too much), may not show up on SFEMG. It's confusing, I know. The CMS ones are genetic, not autoimmune. They can be milder and may not show up on anything but an exercise EMG or a nasty repetitive nerve stimulation where they keep stimulating the muscle for 5 - 10 minutes. It's horrid, I've had it.

In MG, a person can go along for awhile and be "ok." The threshold where their muscles go "downhill fast" is different for everyone. If they aren't tested at the "downhill" phase of MG, they can look clinically normal and normal on EMG. That's also why some offices actually warm up someone's muscles before they test. And some do the exercise EMG's. Some of the CM syndromes tend to be okay for a long time and then the muscles simply crash. Think of all this as varying degrees of a bell curve. Remember that from school?

None of this is simple. I had a borderline SFEMG but I do have antibodies. My clinical picture is MG. My Tensilon test was highly positive. My neuro-ophthalmologist diagnosed ocular MG (fatigable muscles). I respond to Mestinon and have for almost nine years (with absolutely no side effects or overdose effects). I didn't know until almost a year ago that I had positive antibodies (it was kept from me). So your friend may want to get all her records in case a doctor is doing the old "pooh-poohing" of test results (i.e., only slightly positive results).

CMS is common in Nothern Europeans. Also in some Arab populations. Heck, all our genes are intermixed across the world. They only do testing of it here in the U.S. in 2 places. In Europe, they can do it in England, Germany and France. Italy too really. Not too sure about Sweden.

A negative test, as my diagnosing neuro has said, does him no good! Only positive results and/or positive clinical exam. I am beginning to believe that unless you have MG really bad, a doctor may miss it. There are so many variables that come into play (i.e., time of day you're tested)

I hope this helps. It stinks to not have someone take your bad health seriously. It can wear you down.

Annie

Good to see you again, Moshe.

Annie, this DOES help. I think that I am going to have to see if I can get her "over here". It will be so much better for her to ask these questions -- and to be able to answer them. I'm not sure about the time difference -- I was talking to her about noon today.

CMS -- that really makes a lot of sense.

nice to meet you too.