[KrisJ]

I have just been diagnosed with MG after 14 years of being told that I have a myopathy. When this all started 16 years ago, I had been on statin drugs, and had an elevated CPK which did not resolve after discontinuing the statins. Eventually a muscle biopsy was performed by Mayo Clinic which was reported to be consistent with a form of muscular dystrophy.
All this time I have had episodes (which is not typical of Muscular Dystrophy) of fatigue and muscle weakness involving my jaws, tongue, neck, arms, back, hips and thighs, and double vision. In recent months I started feeling breathless, especially when I use my arms overhead, or bend down or lean over. Recently my neurologist's practice was bought out by the hospital and a new crop of neurologists. With this came a fresh look at my situation, and concern for my newer complaints. More tests, and finally a Repetitive Stim Nerve Conductivity which was abnormal. My labs did not indicate MG. The neurologist felt that I have MG, prescribed Mestinon and also asked me to be seen by the MG guru here in town which is a part of the University of Florida (Shands). He agrees with my neurologist. Since starting the Mestinon, I have felt better, (not all better), and not all the time. It seems that it wears off quickly, and now I am using more that I was initially. I was told about la low dose steroid treatment. Would like to know how others have done with that, and if it is a short term or long term therapy. Something about staying on steroids makes me nervous. I am diabetic, have restless leg syndrome, and neuropathy too. Thanks for reading my story. Kris

[Alffe]

Hi Kris and welcome to NeuroTalk. Here is the link to our MG forum...

http://neurotalk.psychcentral.com/forum77.html

I'm glad you have joined us.

[Rrae]

You've found a wonderful place FULL of caring people and endless knowledge!

I hope you get answers to your questions

Just cruise around the different forums and use the 'search' feature at the top of the page to help you with key words or medications!

Good Luck
Rae

[Lady]

Hi Kris,
Welcome! I hope you find the answer to your question about low-dose steroids and MG. I am sure the MG forum will be helpful to you. We all try to help and support each other as best we can.

I am glad you found us. Nice to meet you.

[Darlene]

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

[glenntaj]

--though I'm sorry for the situations that bring you here.

I'm very suspicious, given what you've posted so far, that the statins may well have contributed to your muscle breakdown. Myopathy and neuropathy are increasingly becomeing evident as side effects of many statins, primarily thorugh breakdown of mitochondrial function, and the drug companies, unfortunately, have been not been very up-front about admitting this.

Not to say that your situation is necessarily related, and myopathy/neuropathy can certainly be caused by diabetes, among other things, but your story is suggestive, and not unique (and probably worth investigating--though you need savvy doctors who are aware of the situation).

Feel free to come on over to our peripheral neuropathy forum as well:

http://neurotalk.psychcentral.com/forum20.html

--there's been cosiderable discussion of this subject, and a number of scientific references to it in the literature we've linked to (and you can bring those to doctors if needed).

[KrisJ]

Thank you all for the nice welcome. You immediately made me feel that I have friends out there. Hope you all have a nice weekend. Will check back in a few days. Kris