Re: Eileen- Darla, a ? for you...

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I have not done any biopsies as they are still working on Asenath and Zipporrah's and Dr. Whiteman thought if we were to get any definitive answers they would come best from them since I began much later in life to have most of my problems and do not actively have problems as I once did. I still have quite a few issues but have learned how to avoid crisis's quite well, thankfully. Several years ago I was much worse and had many more problems than presently. If I were to get much worse again, then we would consider trying a biopsy if Dr. Whiteman felt it would help. But we know Mito is the problem with Asenath and since it is an inherited disorder and I as well as some of my other kids have the same issues, the docs treat us as Mito patients and treat us as so and that is all that matters to me. As long as my girls get the help they need (and me if things get worse), then I feel it needless to pursue a specific Mito diagnosis for myself. As far as the treatment causing the plague to go away, I am not much help to you there. I NEVER took any MS meds because I was always pregnant or nursing and so just dealt with the issues as they came on my own. Some times were hard and I needed to "veg" on the couch, but I really didn't want to take any meds unless ABSOLUTELY NECESSARY! My MRI's only showed hints of problem areas rather than actual plagues and this was the biggest problem with getting a firm diagnosis. I was one of those possible/probable MS cases. Now we know why! Temporary inflammation in different areas of the brain can come and go and this is what I assume they saw for me. In particular they saw issues near my eyes and control areas for balance. I still cannot turn my head quickly without getting dizzy and off balance, and have some issues from a paralyzed eye. What they saw in your MRI I can't say as I am not a doc but I wonder if there is a possibility of it being Mito related (If they are looking at that for you or any of your kids) as there are several people on this list that have had stroke damaged brain tissue even get smaller or disappear over time. Dead tissue naturally shrinks I have been told. All these issues is definitely something to discuss with your doctors. Sorry I can't help more. But feel free to ask anything more and I will try to help. Darla: mommy to Asenath, Zipporrah, Luke, and the other 6 kiddos Re: Digest Number 2672> > Hi again all, just wondering, I got some feedback from my sons physio today.> She said that she thinks that what she initially thought was hypotonia and> ataxia, probably isnt, which is good news for us. But she thinks that he may> have some type of muscle problem, where by his muscles have no endurance,> ie. they wear out of energy very quickly, and possibly for some reaon arent> recharging correctly soon enough, sort of like what they think I may have> (myasthenia gravis) which is a neuromuscular transmition disorder, it means> that the little transmitters that tell my muslces that they have more energy> are faulty, so that when I use that energy up they arent gettign the messge> that theres more energy needed to be sent, I guess very similar in a way to> mito??? ANyway they are not sure if htats what I have anyway let alone him> having htat also, as he shouldnt as if it was congenital then I would have> had it all my life also, and he is too young for it to be like mine (late> onset), also they are still debating me also, as I am proving negative for> the tests so far, indicating that it may be something else!!! (phew) also> there some speculation that I may have MS instead or as well as.> > So to get to the quesitons!!!!> do any of your children also have similar muscle problems, where thier> muscles run out of energy with repitition??? he also gets one sided ptosis> when tired and his joints "pop" when he is lifted up, his arms pop and when> chaning his nappy his hips pop also.> > Thanks> Cindy> > > > >