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

Hi-I found your post online and even though it's from 2007, I was wondering how the discovery process is going. Have you been properly diagnoses yet?

Based on the few things you mentioned it doesn't exactly sound like you have Myasthenia Gravis (MG). I have MG and though we have very similar symptoms the fact that the Mestinon was making you sick may be an indicator that your body does not need what it is supplementing. I currently take 180mg of Mestinon 4 x's per day and don't have any side effects.

When I read your biopsy results it sounds more like you have a Mitochondrial disease. Do a goodle search on it and see if it sounds like what you've been experiencing...

I hope you've found what you need by now, but your post touched me so I wanted to see how you're doing.

Take Care,
m