I've looked for posts to find out what you have going on and found this:
I'm Roxie and I just found this site.
I have just been diagnosed with Neuropathy Myopathy by my Rheumatologist after having a (very painful) nerve/muscle biopsy. I have been having severe pain in my arms, shoulders, hands, legs and hips since early Feb. of this year.
I've had MANY MRI's, Cat Scans and blood work that was to no avail other than to show I have low Carnatine level in my system...so I'm taking supplements now. I'm not Diabetic. My Rheum. is now trying to narrow down what I have through blood work. I'm taking Lyrica for the nerve pain though it's not working real well. I've tried Neurontin and it didn't work well either. My doctor mentioned a weekly IV that might be an option but after reading about it, it doesn't sound like a good option. (has anyone tried that??) I'd love to hear from anyone with ideas, suggestions etc......
I also suffer from Barrett's Esophagus, Interstatial Cystitis and Irritable Bowel Syndrome and Osteo Arthritis.
Thanks! Roxie
I have some questions for you: what tests have you had and what EXACTLY do they show? Myopathy/neuropathy is not a diagnosis. if you have myopathy, it has a cause; same with neuropathy. Both need to be investigated.
Carnitine deficiency is one of the few things which causes both, and if this is what you truly have, you have a mitochondrial disorder, and I'd suggest you visit a group for that. But defintiely google on carnitine deficiency to leaern more. It's not necessarily a minor thing.
As you might know if you've read the stickies, I've posted a site,
www.lizajane.org, which lists ALL the tests which must be done to be sure a proper diagnosis is made. Please get ahold of all your results and fill them in on the charts, so we can all see what is going with you.
But you ought to know, "except to show a carnitine deficiency" is not a minor finding. And the carnitine you take for replacement may not be doing the trick. What are your latest blood levels?
For instance, I keep track of my levels now, as I realize now that going off the carnitine had a major impact on me, and I have to get them up again:
..................................7/14/2004....... 9/13/2004.........4/26/2007
Total Carnitine...34-67 ...... 46 ................ 34 .............. 26
Free Carnitine...25-54 ..... 35............. ......31..................22
Carnitine Ester...3.8-19............................. 3 ........... 4
I'm not good at getting columns to line up here, so they might not show well, but you can see that it's possible to track your levels. The 2004 bloods were during replacement, then I gradually decreased and stopped, so I'm abnormal again. It was a dumn thing to not realize how important this was.
Also, if you're carnitine deficient, it is VERY important to take at least 100mg of CoQ10 from just about everything I've read. Please read the support groups and make your own decision there. But tell us more so we can help you in other ways also.
http://www.emedicine.com/ped/topic321.htm