The doctor did call and said my test were abnormal. I guess Mg is my diagnosis. I really did feel I needed a second opinion, but boy what a painful test. That will be the last one I ever have done near my eye.

I am sorry that it was painful, but @ least now you have your dx!

Happy days are here again! Now you get the meds you need in order to feel GREAT!!!!!!!!!

Erin

I'm glad you've got the dx! Some of us take years to get it, and don't have the meds to control it until they have it, so you are now on your way to getting to have a LIFE again! YEAH!!!

I'm a little nervous about my clinic now. I hope they'll be as thorough this time as you all have indicated, but not sure how I'll do if they want to needle my face like that! Sometimes, if you're gonna HAVE to endure something, it's better to make like an Ostrich until the time comes!!!!!!

Lot's O Love!

Becky

Would anyone care to explain exactly what happens during an eye EMG? My husband's kinda nervous about having one done. Don't pull punches when explaining it, please.

Edit: LOL, just noticed Becky wants to keep her head in the sand. If someone would prefer to DM me with the details, that's fine!

Barbara, It is indeed very painful, isn't it?! I'm glad you have an official diagnosis though. The reason they do that area is that it is often the first area to be weak in people with MG. Even if the rest of the body appears clinically "normal" the eye/forehead area will usually be positive.

Alice, Usually it's the Single Fiber EMG they do on the muscles around the eye. They will often test the forehead right above the eye. They can do the eyelid, the area on the side of the eye or underneath. I've had it done in all of those areas. With a SFEMG, they put a much smaller needle in one area. They may move it around slightly after it is put in. That area of the face is simply very sensitive to pain (lots of receptors) and it can really hurt. It's not the kind of pain that is constant. The pain is basically from the poking into the muscle or moving it around. They will then look for a single muscle fiber to test (thus the moving around).

The eyes will likely tear up from a test of the eye/forehead muscles. Mine did. Even though it is painful, it is something most people can tolerate. You can always tell the person doing the test that you need a little break or something. I just wanted it to be over sooner! And it helps to just say "ouch" or whatever, as long as the doctor doing the tests knows you are just vocalizing and not telling them to stop!

There may be some bruising and tenderness of the area afterwards, which is normal. You can put a cool washcloth on the area to reduce any inflammation. Or take a Tylenol before and/or after the test.

I didn't pull one punch! Hurts like the dickens but most everyone can handle it. And it's not dangerous.

Annie

Thanks Annie - make me pull me head out, huh?

Just kiddin. I have handled multiple cervical nerve blocks, and 2 child births with no anethesia, so I'm sure I can handle this without too much trouble.

It CAN'T be as bad as the nerve blocks - once they hit that nerve with the steroid, all the muscles served by that nerve just kind of seize up. I also figure if I could do THAT with no deadening and not even flinch, I can handle anything for a few minutes!

For reals, thanks Annie. It's good info to have, including the aftercare!

I'm so sorry you have MG, but am glad they'll be ontop of it now, and you'll be able to get the treatment you did to live a normal life...well, close to normal. My prayers for you is that it will be better than normal!
Those eye emg's, are awful.
They did both sides on me, and I tell you, I thought, I'd collapse with exhaustion from having it done, and it didn't help that the machine kept messing up, and they had to restart over and over again. Just awful.
I can't remember if they did the needles though..driving me crazy on whether or not they did. Just can't remember, I've had too many of them.
Love Lizzie

I had a thymectomy in 2005 and have enjoyed relative remission since then. Occassionally I have break through symptoms but mostly just ocular. All of a sudden about a month ago, I began to weaken. The entire right side of my face fell - like I'd had a stroke. It became difficult to lift my limbs and in the end I could not hold up my head or chew. That is when I went to the ER and was immediately admitted to the ICU. I was told I was very close to going into respiratory distress. It was extremely scary!! They started me on IVIG and steroids immediately. After five days I was much better and able to go home. I remain weak but improving. Now I'm on Cellcept and steroids.

I continue to wonder how long I will be able to hold down a job and if/when I should start looking at disability. Does anyone know whether or not having a Myasthenic crisis makes it more or less likely to happen again?

My advice to anyone going through what I did is not to wait as long as I did. I was told that I was very close to respiratory failure and would have had to be intubated. Once the head and neck muscles begin to weaken - get help quick!

Also I"m just needing encouragement and support from fellow MG people. It is a very lonely, misunderstood disease and I'm struggling to get back on my feet. I live alone and have no family.

Thank you

Hi Leaning.

It must be horrible having to go through this with no one to be there with you. Here's some 's.

How scary that must have been for you. Do you have any clue what might have brought it all on? Did you start on any new meds. Had you been doing more than usual for a while? Funny me asking all this, since my neuro and I just had this conversation! I didn't have any real good answers for her, other than I overdid gradually, maybe?

You may want to start a new thread with this post to get better exposure. I'd love to get more details from you - have you been able to work fairly steadily since 2005? Or has your attendance at work been declining due to the ocular problems increasing?

I'm sure you'll have lots of us on to answer questions, etc. on your thread. I'll watch for it! You take extra care, get lot's of rest, and we'll be talking I'm sure!