Repetitive stim test and neuro apt
 

I had a neuro apt today, it's a year since I started going to the university clinic and I'm always anxious about my apts!
The neuro has done a lot of testing, but also doesn't seem to think that I have much weakness, which to give them credit, it is the ALS/Neuromuscular clinic, and since I am walking and talking, I can see how they wouldn't take me as seriously, and I'm Thankful to look much better than most of their patients!! It is however, still frustrating when they think it could be my anxiety that makes me "feel" weak.. ugh.. i hate hearing that. Yes i'm anxious during my dr's appointments, but as I told them, when I'm carrying my kids around out having fun and my hips become too weak after too many steps that I can't go forward any longer, it's not anxiety. Anyhow, that's besides the point.. I'm thankful that they do take me seriously enough to give me the IVIG !!

I had repeat pulmonary function testing, and was sooooo excited that it has improved from 1 year ago - it was 72% last year when I got admitted and it was in the mid/upper 80% today!! SOOO happy about that!!

It did seem like the first time today that they thought out of the box- they said. "hum" maybe your seronegative MG? before this it was simply - your tests are negative, that's not it. They then realized they hadn't done repetitive nerve stim test on me, so we scheduled that in 3 weeks.. How sensitive is this test for MG? Those of you who have confirmed diagnosis of MG, were yalls abnormal? They specified doing my traps and face. he mentioned SFEMG, but didn't order it afterall.

A lot of my symptoms that do sound like MG, and then I have others that I dont' think do.. So, i was just curious how much weight to put into the repetive stim in a few weeks

Anyone have any info/opinions on this repetitive nerve stim test?? Just not sure how much weight to put in it. I appreciate any opinions!! :)

You're on drugs to make MG disappear (right?) so it's hard to say if the RNS, which is not as sensitive as the SFEMG, will show something or not.

An MGer can test positive on one test and not on another - or positive on both. Or neither. ;)

The SFEMG is more specific to MG but a positive result on any test is weighed along with the clinical exam. MG is a clinical diagnosis backed up with tests.

In people who have had more than one neuromuscular problem, it's harder to discern what's what, especially if your neuro is not an MG expert. That expertise does come in handy with more difficult to determine cases!

And no one can tell by "looking" if someone is weak! Oy. With MG, we get weaker the more we do which is why some doctors do exercise EMG's or longer clinical exams. They should really put us in a sauna and then have us go up a couple flights of stairs before they examine us.

And you can't compare ALS and MG. They're completely different. ALS is progressive weakness (to a point) and MG is fluctuating weakness. Some patients with ALS can respond temporarily to Mestinon and can confuse the diagnostic process. We can at least try not to die, which I really wish were the same for ALS patients!

Why not have the test and see? A negative test, however, does not prove anything. A negative does not prove a positive. So if it's negative and your docs throw their hands in the air, you can say it doesn't prove anything, especially since you are on drugs that can make the disease "disappear!"

:hug:
Annie

Thank you so much Annie..... I hadn't even thought of that.. I will be at the end of the 2 week mark from IVIG when the test is scheduled.. I am 3 weeks out now.. which is the longest i've gone in a long time, and I am getting Floppy all over, difficulty swallowing and a droopy face etc.... I wonder if that will cause it to be false negative (if it even would be positive in the first place)...

I have never heard that ALS could respond to mestinon at all.. that's interesting.. What I have defintely fluctuates.. and it completely went away with the 2nd round of IVIG... but after that one wore off, I have symptoms most of the time.. though not first thing in the morning..

As far as the sauna thing goes - seriously, that would be perfect! I go outside here in August and I literally melt- my husband couldnt' believe how my face changed, and extending my IVIG out showers are getting hard on me!
Thanks again so much for your help!! I'll let ya know how it goes!

Omg, the sauna idea is brillant!