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lipomas in mitochondrial myopathy

by paula9002, Jul 13, 2008 05:13PM
Diagnosed with Mitochondrial Myopathy several years ago with testing showing Complex I, and Complex IV (SON)affected and lower normal limits (in 5% tolerance level) for Complex I+III.  For many years, I adjusted my activities to allow me to maintain my home and family care.  I have been stopped in my tracks by recurring/worsening symptoms when I have pushed too far by slurred words, tripping, blood in urine, etc. and have always had to follow up a day (hours with rest stops throughout) with two or more days where I am very limited by energy, pain and muscle weakness.  In the past couple of years, however, I have had to do more and more with my recently retired (military) husband returning to school while working full time and see a worsening of my symptoms.  It would probably not be considered much by most people but it leaves me exhausted and in pain.  My question is regarding the lipomas that have now appeared on my arms, sides, and chest...too diffuse to count.  It is impossible to put an pencil eraser where they are located and not hit one.  Are these appearing because my muscles are breaking down, wasting?  They may have been growing for some time but putting on lotion, they feel like hives but under the skin.  Will they continue to grow?  Is the numbness and tingling in my hands and lessened feelings in my arms and back related to these growths?  Will reducing my activity level slow the seeming progression or is this just a part of the disease?   I have not been able to be in the heat for many years (I do not sweat) but have now gotten progressively intolerant of cold (I now keep the ac on 76).  My fingers turn blue then black then white and it takes forever (even when running under hot water) for them to return to their color.  I had to wear gloves inside this past winter and cannot even hold a cold soda without a towel wrapped around it.   Does this have to do with the lipomas or is it an autonomic  neuropathy that is related to the same one that has caused my orthostatic hypotension? (verified by tilt table)   Do I need to find a doctor that will test to make sure that they are not in muscle or organs (as many articles that read mention) or is that not really a concern without symptoms?  I appreciate any help that you can give.  Since our last move, it is difficult to find a Doctor who knows anything about this or even one who has the time to read up and find out about it.  Thank you. P
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