Mitochondrial Disease

I was Dx with Mitochondrial Myopathy in 9/09 after much testing and labs and finally by muscle biopsy. I was recently told by my neurologist that there had been some research done revealing their effectiveness of Leucovorin in helping to control the duration, intensity and frequency of muscular spasms and cramping, sometimes crippling in its active phases. I began this therapy and within just a few weeks I was having less intensive cramping, the duration was even for less amounts of time. It became more tolerable. It did not do much in controlling the weakness and fatigue I felt but any relief was greatly appreciated, The local pharmacies had to pool their supplies to fill my prescription, I guess my dosage was higher than the usual. It was in a word experimental. I was taking 75 mg every day. Each month, my bottle would have varieties of the medication. different colors and inscriptions. The pharmacies stated it was because they got the pills from different stores to fill it, then last month, when i needed a refill i was told it was no longer available. I am completely disabled and living on just SSDI from which my medicare benefits are deducted, my parts c and d are also deducted, i live in subsidized housing, unemployed and unemployable. I was happy to be able to receive a medication that helped to control the pain only to discover that after just 4 months it is no longer available. I contacted my neurologist for alternate therapy options only to be told that a Dr. in the south who has devoted his entire career to researching mitochondrial disease had made the discovery that some Mito patients responded well to this treatment. My Dr. initiated it and it seemed to be having some measure of success and now I am no longer able to obtain it. I want to know why I am unable to get it and if you can make it available to me again.

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This website does not manufacture, nor make available any medications, it is an information only website.

I am sorry about what you are going through, it's terrible to see anyone suffer.

Do you happen to know any other information on it, such as who manufactured the medication you were trying?

There's nothing listed about it being used for such issues. It might just have been a trial to test it and see if it was effective and, if that is the case, it may be difficult to get again, until/unless it gets FDA approval.

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I need info on mitochondrial disease causes and treatments.

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