Someone cancelled today and I got their appt!

After exam my Neuro ordered another round of ACHR testing as well as the MUSK test from Mayo clinic. I'm waiting for a call for the EMG appointment.

He said "you're not going to like me very much after this test". I've had these done in my legs and it was very unpleasant but this is done around my eye?

Can someone tell me of their experience with this test? Lord knows I'm no novice when it comes to needles but just how painful is this?

That's great that you are being seen sooner! When is the test scheduled for?

A Single Fiber EMG is where they look for pairs of muscle fibers and test whether the "jitter" is above normal. The doctor might test the forearm muscle as well. The test can hurt, and requires your cooperation (tensing the muscles being tested by raising your forehead muscle, for example). The pain is only temporary! For me, the test stung a bit. But knowing the pain is coming helps. They need to do the test in the muscles that are obviously weak.

Are you on any drugs, such as steroids? That would affect the test, as would Mestinon. You should be warm and well-hydrated. Don't try to wear out your muscles.

I'm glad they are redoing the tests. Mayo invented the AChR test. I've had a negative result at one lab but a positive one at Mayo.

I hope they figure out what is going on.

Annie

https://www.aanem.org/mxonline/resou...ducts/sfmg.pdf

http://pn.bmj.com/content/practneurol/3/2/96.full.pdf

He said it would take about 4 weeks before I can get in for the test. They will call me with the appointment. Apparently the doctor (not a tech) who does this specific EMG is very good and empathetic as well.

In the meantime, I should have the bloodwork back from Mayo (just the MUSK) and when we have all the info back we can take it from there. The same lab will repeat the ACHR tests. In the meantime I do have a tentative dx so that's a start. I'm not on steroids or mestinon but he took me off the magnesium oxide he had me on for migraine. He doesn't want me off the clonazepam until the blood test results come back as they really help with my vertigo attacks.

It absolutely helped that I'd gotten pics of my eyes when they drift and selfies of my ptosis in one and both eyes at different times of the day. My eye acted up during the exam too. They've never been able to get the reaction during an exam.

He does feel it's MG but we need to know if its ocular or generalized.

I had the test last week. I tested negative on all lab work. I was diagnosed with MG at the conclusion of the EMG test. The part of the test around your eyes (both sides of yor nose) was very uncomfortable and is hard to remain still. It's not needles, but electricity shock. It works the muscles by having them repeatedly contracted, the computer can tell if they become weaker.
Good luck!

I just got an email that they can do my test on September 20th. That was a surprise!

I'm a just get it over with kind of person so this works for me.

AnnieB3, I'm glad you said something about not taking steroids earlier. This afternoon I went in for a follow up from my lumbar fusion and she wanted to put me on a medrol dosepak or do injections for the nerve pain. I told her no new meds until we get this other stuff figured out.

If you are taking Mestinon, also talk with the clinic about your Mestinon dose. Taking Mestinon can affect the results of the EMG testing. They may want you to adjust your regimen that day.

The test is not exactly fun, but on the other hand, it's also not the worst test I've ever experienced. The test may be scheduled for an hour or so, but the actual moments of testing are brief, just short moments and then there are pauses while they recalibrate. It's probably a few minutes altogether that you will experience discomfort...it is not the full hour. A lot of it is measuring and setting up the machines. It is all worth it if they can come up with a diagnosis. Sometimes it's easier to get through things like this, at least for me, when I remind myself that it's just temporary! Hopefully you can do something nice for yourself when it's all over. :-)

Take care,
Erin

Good catch, SLee! Yeah, even a small dose of steroids can affect the MG tests (antibody tests too).

Only very few people have just ocular MG. Progression to generalized MG can happen slowly or quickly or somewhere in between.

Please research steroids, if you are diagnosed with MG. The side effects over time can cause other conditions and steroids are very hard to withdraw from. MG experts are now saving steroids for during or post-crisis.

I hope the test goes well for you!

Annie

Well, all of my bloodwork was still negative, including the MUSK. Leaving shortly for my SFEMG/EMG studies.

I'm worried this is going to kick me into a migraine or a fibro flare and I'll be down for days.

Premedicate with some acetaminophen! Drink plenty of water. Stay warm. Good luck!

That was no fun at all. They did repetitive stim EMG on my hand (inner forearm), neck (trapezoid muscle) and face (behind ear lobe). Then they did the single fiber EMG. That part was a very thin needle in various spots around my eyebrow and forehead.

The RNS was negative. She said she had to study the SFEMG and would get it over to my neuro.

So... I wait.