I have and still am in the same place that you are in. Next week I am getting an EP study to make sure that my heart is OK. I have had so many tests but not muscle biopsy. My doctor gave me test for mitochondrial disease but it was negative ( Only a test for two forms, the most common) . The results were negative and he basically said " I cant help you "

please if you find out anything keep me posted

Thanks will do - what are your symptoms?? I feel like my muscles (mostly shoulders, buttocks, hips, and trunk) are wasting away.. my hands have noticable atrophy as well.. then sometimes I feel numb all over- it's crazy! I feel like I'll waste away before anyone ever figures it out.. though the IVIG does seem to help thankfully

I'm in the same situation you are - looking for a doctor who can DX my problem. I have a starting appointment with a neuromuscular specialist at Emory in Atlanta in Feb. I know they do mito diseases there so I have some hope - just have to hang on for 3 more months!!!

I have muscle wasting, weakness, and twitiching in almost all muscles now (originated in my hands and forearms). My original neuro ruled out ALS after 3 normal EMGs over 8 years. Weakness is mostly subjective (though 1 dr did say I had a little) - I feel weak but can open jars, walk on heels and toes, etc... However, my muscles pay the price with pain afterwards. I also have a heart rhythm problem - it can go from 100 beats/minute down to 30/minute in a few seconds then shoot right back up. The cardio claimed its a "wiring issue".

I would try to find a good neurologist or if you can, a mito disease specialist and have everything possible tested for. I think it's better to have a good DX, even if it's bad, then to not have one at all!

It took me over 3 years and many doctors to get onto Duke Neurology. I had been told at Chapel Hill that I did, then didn't have MG. Then they just stopped communicating entirely. Dr. Hobson-Webb at Duke is amazing. It took 6 months to get in but she personally supervised nerve conduction testing that day and expedited a MRI to find the best location for a deep tissue muscle biopsy which was done within 6 weeks. It took longer than I would have liked to get the results but it was in the middle of the holidays. Since they did find Mitochondrial Disease, some of my samples were sent to Columbia University for further analysis and we will have a meeting to go over the complete game plan at the end of this month.
She said I have had this my whole life and it explains all the unexplained symptoms over the years. It was nice to hear that I was not crazy!
Symptoms include: Some atrophy, mysterious falling, tremors, drooping eyelids, increasingly unsteady gait, increasing fatigue.
I have been told a muscle biopsy is the only way to know for sure.

I am just migrating here from MG thread. Turns out my last hope, the single fiber test, was negative. Muscle biopsy next. I am so frustrated. All I can say is that I'm right there with you. All the symptoms, all the tests, no diagnosis. All the frustration. I do have some very baffling relief though. Mestinon really works well for me with no side effects. I'm sticking to it until they decide. I will watch how things go for you and hope for your best.

I started muscle atrophy about five years ago when I lifted too much weight in training. Something clicked in my spine, I remember it clearly, and I fell unconscious. Then I went to the doctor and was told that I had damaged my vertebrae because I was working with large weights, which could cause muscle atrophy. Also, at that time, I was taking large doses of anabolics, which also affected my condition because now my thyroid gland produces very little testosterone. And for five years now, I have been disabled because of my stupidity! Therefore, we must do everything wisely.
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