I have been testing for MG and they were not sure if that or a muscle disease. I had a postive EMG, then negative EMG, all negative antibodies. I had a positive SFEMG.

I had the muscle biopsy right after Christmas and it was abnormal. Provisional results are "skeletal muscle with rare atrophic myofibers".
Under the findings they said:
"Rare atrophic myofibers found among normal sized fibers"
"Most of the atrophic fibers are type 2. There are no significant fiber type grouping or fiber type dominance"
"Four myofibers shoe increased staining of succinate dehydogenase. At least two of the fibers suggests hyper contraction, a common artifact"
"The epimysial adipose tissue shows mild reactive changes including early focal fibrosis and a few histiocytes or macrophages"

Any ideas? Thanks.

I received more on the path report... I think the final.
"Final Diagnosis: Skeletal tissue with rare atrophic myofibers. Reactive Chages in epimysial tissue, focal, chronic.
Comments: The muscle biopsy specimen shows three COX-deficient fibers. This abnormality raises the possibility of a mitochondrial disorder although the COX-deficient fibers are rare and may not be significant clinically. In addition, the epimysial fat show focal reactive changes. The cause of this abnormality is not clear based on the pathological examination, but may be related to a monor injury to the area in the past."

The neuro said that even though I am sero-negative, and only my ANA was slightly elevated, he thinks that since I flunked the SFEMG and today did not pass an eye test he did, that he will call me with 70-80% certainty, myasthenia gravis. He is not so sure due to the lack of antibodies (which 20% of MGers are like that so it is not unheard of) and just that my presentation has not been typical.
I am starting another trial course of mestinon. I tried it before and it did not work (hence why I saw him) but I am going to take it a week solid and call him. If it works, great, I continue and MG is certain. If it does not work, I will be hospitalized for 4-5 days for and IVIG treatment (immunoglobulin). If that works, I will need that monthly (it can be done at home by a nurse) and it supports the MG diagnosis. If that does not work, then I have to re-evaluated. My muscle biopsy results were consistent with MG.

Hi rumpled

sounds like you're going through a stressful time.
How many mestinon are you taking?
I hope you get some results somehow.
Let us know how it all goes, and take care!!
redtail

I am taking 3 a day of 60mg... but already it is ripping up my stomach. I don't see a change which is like last time - just stomach and head problems but I am going to stick it out and see if something different happens.

Yep I to had bad tummy trouble, got up and vomited most mornings, until I started taking my mestinon with food, even though advised not to, I also started taking probanthine, and now very rarely have problems. Its so hard mg being such a rare disease, Im the only one in my area, and not having people close by to talk to makes it hard, which is why these forums are so great!!
Hope thing start improving soon!!
redtail

I am taking mine with food - the label on mine says to take it with food or a "small snack" if there is stomach upset. Now I am getting eye and er, bum twitches... and choking even more. So I am already thinking this is not working out so great but this is only day 2. I did not have so much hope since it did not work last time.

Hi Rumpled

just thought I'd check in and see how you are doing???
Hows the mestinon going, I have been having muscle twitches lately, my right eye and in my upper arms, all a bit wierd.

I hope all is going ok, and if the mestinon is not working your drs can find something that will.
take care
redtail

I am getting lower left leg twitch and I woke up this morning, even before mestinon, with my left eye, below the eye, twitching like crazy. Argued with my husband since it is not working and all this twitching and the other effects do not feel good but he want me to keep taking it until I go to accupuncture. So I took another pill but not happy about it.
My eye is still going and it is driving me nuts. The mestinon makes me choke more, not less.
Not really wanting the ivig either... just not really sure. Prednisone is not an option with me due to my cushing's history. I just don't feel well at all.

Sounds like you are having a terrible time at the moment!!
Its so hard coping with just MG and all its side effects tablets etc, it must be worse still to have other things to cope with as well.
I know how scary it is choking, and if the mestinons not working it really must be awful!
So when do you see your doctor again? Is he/she good helpful? I hope so.
Have they said anything about any other medication? Im now cellcept, as the imuran was not working to its full potential.
I hope things dont get you too down, and feel free to talk as much as you want, Im good at listening!!
take care
redtail