I have a SFEMG coming up in four days. The doctor who is doing the test does many of them.

The last time I had a needle emg (I've not had a SF emg yet), I couldn't complete it due to the pain. (I've had two children, broken limbs, and never pain like that).

I asked this doctor if I can take either tylenol or ibuprofen before hand to help with the pain, and he said it would be fine. He said we could do a mild sedative, but I'm not having anxiety about it, I just want to do what I can to control the pain and not invalidate the test.

I am seronegative so have a lot riding on this test.

Hi Restorativepose

That means your test is tomorrow.

I´m guessing if either of your choices for pain relief was a bad one you would have heard from someone by now

By the way....mine is also in a few days. I´ve a lot at stake too and am not actually expecting it will show positive at all. Nevertheless, I stopped Mestinon one week before SFEMG and am having fluctuating coughing & breathing difficulties. I have a phobia for needles so I´m going to take a carton of orange juice along just in case of hypoglycæmia…..and also a little stress ball to try to move the focus away from the pain area. If none of that helps then some other mental strategy (or just plain screaming out LOUD ) will just have to kick in at the last minute. I guess having this plan is at least preventing me from stressing in advance

We can do this!

Best

Anacrusis

Hi

I had tests yesterday. I didNOT stop mestinon (60 mg x6 + 180 mg at night) because dr office didn't tell me not to. I did send 3 separate emails to his office in month leading up to it asking "are you sure there aren't any special instructions?" for test and was told no just show up so that was what I did.

So I flew to Tampa 250 miles away for my test and had EMG, NCS, SFEMG. All were normal (what a surprise since I took 180 mg at 11 pm and 60mg at 7am and test was at 10 am) EXCEPT the sfemg which was done by the actual neurologist who is highly experienced in administering it. Sfemg was abnormal, not excessively but it was.

Since this past Monday after adding 180 at bed on 8/29 I have had incredible improvement! The dr said may be that the 180 at bed has helped me to get good rem sleep ( i had severe issues with not keeping eyes closed while sleeping was going on for about 9 months) and that is why feeling so much better
I.e. MG symptoms were exacerbated by lack of good sleep.

Soooooo don't sweat it about the tests, they were not so bad....uncomfortable unpleasant (couldn't tolerate neck stims they hurt too much to stay still) but otherwise fine, flew home after all the tests and even went ut for ice cream before going to bed early last night.

I feel so much better it is hard even for me to believe I am so sick!

Ps for now I will stay at current doses of mestinon plus we are adding prednisone 10 mg per day

By the way for me at least, given my positive reesponse to the high dose of mestinon, I get impression the tests were intended more to rule out other illness than to get positive diagnosis of MG. having said that keep in mind when pressed my dr said he is 80% surei have MG.

He didn't say this but I think without some otheer entity providing some printout that says positive they can't say
100% bcs neurological illnesses are very complex anyway.

CONGRATULATIONS on your SFEMG abnormalities (I think!!!)

Glad you enjoyed your celebration ice cream

Fabulous that you are sleeping better I agree symptoms are worse without proper REM sleep

It is very unlikely that the neuro in my town has done many of these before which is why I have a back up plan and recommendations for taking the test in another country if I end up having to - So for now....

Getting up at 2 a.m. on the day of the test…..
Walking around the hospital grounds a few times…..
Cutting out Mestinon….
Cutting out coffee……
Wearing wool garments to heat up body... (not so nice)

I know that all of these things will at least not end up hindering that test.

Thanks so much for all the details of your experiences, Stephanie & good luck with your new treatment plan and all those new hobbies

Restorativepose, are you there????? Did you have to travel far for your test? This is your thread so we hope to hear news from you very soon!


Anacrusis

Good luck on tests, don't stress