Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Steve By cellular energy, I mean the available energy in a cell that is available to make the organ systems function properly. I have stopped trying to find relationships as the results of today might not be apparent until tomorrow. I just try to pace my days and not get too fatigued. Walking is a major issue for me, so when I push myself to walk much, I can count on the neuropathy sometime in the future, but walking is a trigger (I use up all my available energy) for many symptoms. You might want to try to find the time and energy to put all your piles into a notebook - maybe two. I find it invaluable to have mine organized in a notebook that I can take to appointments. That way when a doc says it might be " low selenium " for instance, I can get out my notebook and flip to the top two or three lab sheets and not have to be stuck again. I put the most recent on top (have tried it both ways) and get rid of old general labs that were normal - the CBCs, and things of that type. I keep the things like SSDI in a file folder in my file next to my computer. Just an idea that works for me. laurie > laurie > > My PN comes and goes, too, but I have no idea whether this is correlating > with " cellular energy " because I'm unclear on what you mean, exactly, or how > one would measure it in oneself. Perhaps this would correlate with the > internal sense of " energy " , i.e. opposite of sleepiness or lethargy. > > In my case, the VARIABILITY during the day and night, and over periods of > days, is EXTREME. Sometimes it hurts horribly, and sometimes it's nearly > gone. The only sure correlation I've found is that it gets worse with > elevating my feet (it frequently keeps me awake when I really need to > sleep). There appears to be some strong correlation with eating, but there > are so many anomalies that I really can't draw any good conclusions about > types, frequency, quantity, etc. of food, with regard to PN. > > I do note one correlation, that being too warm generally, or especially > warm on my feet, is not good. I love most to be barefoot, or just in > sandals, so I don't like the winter and the need to wear shoes or even boots > outside. And I sleep with my bare feet sticking out from under any blanket, > even in the rather cool bedroom. > > So, more questions come to mind, about what makes it worse one day and bad > the other. The main reason why I want to know, of course, is especially if > there are things I can do, or diet adjustments I can make, or anything else, > to alleviate it. The meds I've tried so far haven't done much, if anything. > > I'd like to hear more from anyone, about what seems to make their PN worse > or better, any details. > > Steve D. > Re: : MS > > > > > > > > Hi , > > > > THere are a number of individuals that were originally diagnosed > with MS > > and > > later diagnosed with mito. Retrospectively, I think that Dr. Cohen, > > SHoffner ,etc have told many of those individuals that the > " diagnostic " > > MRI > > was incorrectly read and the " plaques " were actually lesions > typically > > seen > > in patients with mito. If you have such an MRI, I;d consider having > Dr. > > Cohen or Dr. Shoffer over read it, ie do an formal interpertation of > an > > outside exam. Send the films with a clinical history and other > > diagnostic > > info. > > > > MitomomX3@... wrote: has anyone been diagnosed with MS and > mito? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 Thanks for your reply, Laurie. I too have predictably worse PN after a walk, but not always. I'm still looking to understand better, the underlying cause of PN in mito. " Cell damage " sounds reasonable, but I still want to know more, ESPECIALLY why does the pain vary so much. I mean, during the day my cell damage probably doesn't change much, but the pain level sure does. So please, ANYONE ELSE, I'm looking for any observed correlations regarding when the pain is most or least severe. Particularly but not exclusively, in the area of food types, quantities, etc. As to these " piles of folders " on my desk, you may have missed my point. I have all this very organized. Rather than a notebook, I bring a selection of my folders in a small briefcase, when I see a doc. This works fine for me. What I meant to convey is that the activity related to keeping appointments, retrieving test results, organizing it all, dealing with various appeals, fulfilling the requirements of the latest forms, etc. is a lot of effort for me. Fortunately, it's lessened somewhat since my SSDI was finally approved (at the " last " level, administrative judicial review). But it's still daunting. So someday I may get my act together enough, to put together a little TV show or something. But new things keep coming up, like now I'm chasing Medicare Part D plans and formularies, and trying to get some support (i.e. a letter) from my doctors re the " medical necessity " of OTCs like carnitine. Steve D. Re: : MS > > > > > > > > Hi , > > > > THere are a number of individuals that were originally diagnosed > with MS > > and > > later diagnosed with mito. Retrospectively, I think that Dr. Cohen, > > SHoffner ,etc have told many of those individuals that the > " diagnostic " > > MRI > > was incorrectly read and the " plaques " were actually lesions > typically > > seen > > in patients with mito. If you have such an MRI, I;d consider having > Dr. > > Cohen or Dr. Shoffer over read it, ie do an formal interpertation of > an > > outside exam. Send the films with a clinical history and other > > diagnostic > > info. > > > > MitomomX3@... wrote: has anyone been diagnosed with MS and > mito? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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