[MomYaYa]

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!!!

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.

[AnnieB3]

No, you can't give up. Sorry, it's not allowed.

Okay, so temporarily hole up and recover. I still have a "hole" in my forehead from a SFEMG from six years ago. You can bruise too, so if they show up, it's normal.

Have you tried cold washcloths or a cold compress? That should help with the inflammation. It's very odd though how quickly you had an inflammatory reaction. Have you seen a rheumatologist to be thoroughly evaluated for an "itis" disease?

You cannot rule out MG with a negative SFEMG. Do you mind listing simply what the evidence is so far?

I think you may need a muscle biopsy. They haven't done one, right? If your muscle fibers are small, that should be a big clue to the doctor. Duh.

Don't despair. A good doctor will realize that MG is clinically diagnosed and backed up with testing. A negative test doesn't prove anything!!! A negative doesn't prove a positive. Ask anyone in science if that's how things are proven. NOT!!!!

I've been where you are now and it's not fun. It's completely devastating really. To know you are sick and to not have definitive evidence can make you feel nuts. But diagnosing is not always that easy. So I hope you will hang in there and realize that MG or CMS or LEMS are not always as cut and dry as doctors want to think they are.

Well-being and quality of life is something you are in control of! And it involves a lot more than what doctors can give you or take away from you. Yes, you need their help right now but don't let them "control" your life. I wish I could help you and others like you get the best care possible. It really tears me up. You'll be okay!


Annie

[DesertFlower]

Originally Posted by MomYaYa

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!!!

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.

I understand how you feel. Sorry you had this experience, I think that it is not common. I, too, was not prepared for the extreme pain of this test. I have a high pain tolerance but still ended up crying and telling them it was torture and the worst pain I've felt in my life, it was all I could do to stop from defending myself or hurt someone. If I remember right it took at least a month to get over the weakness caused by this test, it put me in bed the next day and I couldn't even roll over in bed for a while. I know if anyone wants to do this test on me again I will refuse. I thought I was going to die once I got home and at the time didn't know enough that I probably should have gone to the emergency room. It was really bad. I didn't know I had MG at the time.

I hope you get a diagnosis soon.