Myasthenia Gravis Support Group

OOMMMGGGG!!!! I told the doctor he'd to more to help the world if he took this barbaric torture to Iraq and used it to get rid of the Taliban!! OMG!!!

I did NOT apparently have a SFEMG before because this was only in ONE muscle in my left top forearm. And that was stupid because I'm right handed!

First of all, I have a very high pain tolerance, AND I'm normally very stoic. This caused me to cry, and wore me out SO bad that I came home and went to bed. 800 mg of Motrin didn't take the pain away and today I'm even in pain still, though the swelling in my hand is down, the arm is still swollen. Pain is better today, mostly like I had a couple tetanus shots. I'm just telling all this because I was NOT prepared.

The procedure was supposed to last an hour to an hour and a half, but it ended up taking 2 1/2 hours!!!!!! My muscle fibers are apparently very small, so to get 'in' (?) them was problematic. He dug and dug and dug, hitting nerves, and I'd swear he his bone with that dang needle!! He explained that he wanted fibers with 'two bumps' and all he could get was 'one bump'.... (I know he explained it better, but all I can remember are the most very basic things.)

Anyhow, at the end he said that he would have to go over it carefully, but that at this point, the test looked wonderful and that my muscles were perfect. He said that even though everything points to MG, that they're going to consider that it's checked off the list.

I'm pretty much done. I give up. I don't freaking care anymore. I don't know what's going on with my body, only that something is going on. I'm just going to wait it out and know that at some point some other symptom will pop up to either make things more clear, or...... not. @@

Thanks for all the support and I wish you all luck. I'll probably stop in now and again, but I'm SO depressed...... not that I WANTED MG, BUT I wanted an ANSWER!!!!!!! So. I give up.

oh i'm so sorry. like i said i remember when i had my sfemg and i cried also. i didn't start crying till he got up to the face. whenever he talked to me right after the test he talked like i did not have mg, but had me come back in a month. i was so confused because they would say you have it then the blood work would be negative. then i had the emg and he talked like i didn't have it. when i went back after that i just flat out asked them do i have mg and he said yes. like you immediately after the test he said he had to go over it.

good luck and do try to drop in when you can.

quilter

I don't understand why they are not doing the SFEMG in your facial muscles. My understanding is that they are the most sensitive and the most likely to show a positive result. Please do not give up. Hang in there.

I think the reason for using muscles other than facial has to do with the ease of finding single fibers in larger muscles. The frontalis muscle of the forehead is often the weakest muscle with the most MG patients. However, most doctors feel more comfortable using the larger arm muscles. SFEMG can be difficult procedure to perform correctly and to interpret. I had a standard EMG on my face and there was a difficulty separating/identifying the individual muscles on the EMG computer so when they did the SFEMG, they did my arms instead. I think we all like to think that any test has definite pass/fail parameters but a great deal is left to the clinical judgement of those performing the evaluation. The only time identifying MG is "easy" is when a person has classic symptoms and no other medical conditions clouding the issue.

can anyone explain the SF EMG process to me? I'm having one done in 3 weeks and I want to know what I'm in for. I have heard from many places that it is very painful, I'm just looking to be prepared. Also, how is the muscle biopsy? I get one of those at the same appointment!

I think the particulars vary from facility to facility. When I had mine, it took most of the day including the other testing done. I started with a tech, a resident and the doctor in charge of the EMG lab. They spent about 2 hours or so doing a very thorough EMG to get baselines and to see any indictors regarding the cause of my muscle weakness. It was very painful. The 2 hours did include some breaks with heating pads to keep the muscles warm as I was told that helped with the testing. They did my legs, my arms and my face. Following the EMG, I was sent to have blood work and a CT of my Thymus. After that I went back to the EMG lab for the SFEMG which took about an hour. The MDA neuro conducted it after she consulted with the EMG lab doctor. She only did my arm. It hurt as much as the EMG with the added pleasure of having her dig around for single fibers and something called paired fibers. The only good thing about the tests was the fact that med students and residents observed it all so I didn't have to ask many questions as everything was explained to them and I got to listen in while they all discussed my diagnosis and what the tests indicated. So...I got the medical version of the results and not just the patient version.

I was told that a muscle biopsy was not needed as the results of the SFEMG and Thymus CT supported the MG diagnosis so I can't give any info about that test.

Were you told to stop the mestinon 1-2 days before the SFEMG so that the medication does not interfere with the EMG? I was weak and dysphonic (hoarse and very soft voice) during the test day. Afterwards, all the tested muscles will be sore or at least mine were. Since it hurt to move I followed the EMG lab's advice and used a heating pad. I wasn't moving any way so the extra weakness was okay as long as it helped the pain.

yes they tested the facial muscles when i had my sfemg. they started out with the regular emg for a baseline then they did the needles in the arm and my forhead. like dclsp i started out with a tech then my mda neuro dr came in and he had a lot of med students with him and he was explaining a lot to them. when they were just shocking my face it was just under my right ear at the jaw, they said that was the place to give them more of a reading if i had mg. that really hurt cause they had to keep shocking that part. the needles weren't too much fun either, they didn't stick my legs or feet but my right hand and two different places on my right arm and forhead.

that was my experience.

quilter

I had EMGs done prior to my SFEMG, so when I had my SFEMG it was just that. it took about 2 hours from start to stop, and they were shocking me at least most of that two hours. It was all in my muscles by my eyes. It was uncomfortable, but didn't really hurt. It was harder for me to go off my meds beforehand, and was more sore after. I would not really describe the SFEMG as painful. I do have a high pain tolerance, though.

Thank you for the insight, my SFEMG is 2/16/11, we are praying for answers. If this doesn't turn up a solid diagnosis so that we can begin aggressive treatment, we will move on to the Mayo clinic.

DD will have a SFEMG on 3/22/11---she wants to be prepared, but not unduly frightened. She did beautifully with the EMG of her right hand, leg and side of the face--she never so much as winced through the entire nerve conduction study.

She is incredibly stoic....I guess everyone has a different tolerance...wondering, MGSUCKS, how yours went?

If I could do this instead of DD, I'd do it in a heartbeat. Watching someone else suffer is just such a helpless place to be.

I hope you are having a good day today.

Until soon,

A's Mom