Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Actually I am not taking anything presently. I took Carnitine during part of my pregnancy because I tested low but after a couple of months I was doing better with my levels and began having heart palpitations and heart arrhythmias (after sugar intakes) for the first time ever and Dr. Whiteman wondered if the Carnitine might be causing it so I stopped the supplement. I have never taken the COQ10 and never pushed to do it since seeing Dr. Whiteman because over the past several years I have been doing much better-at least until my hysterectomy 5 1/2 weeks ago. Following that I believe I might have suffered a minor metabolic stroke on the left side (or something) and lately I have been struggling with some increased fatigue and black-out symptoms after standing from sitting or lying (blood pressure drops I assume) along with some buckling of the knees and ankles the past few days. I think I am recovering from the surgery pretty well considering everything but am still anxious to " be normal " again. LOL I am glad I have helped you some and would love to help with anything else you want. This group is the best place to meet and make friends who REALLY understand! I have been a part of it since 2002 and we have been through sooooooo much together. I hope you find it " like home " too. God bless. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a photo look into Mito) Darla: mommy to Asenath (5) Probable Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder issues, some wheelchair use, eye issues, gastric emptying issues... Zipporrah (18 months) Probable Mito, strokes, neuro-motor planning, SID, GERD, dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian artery, disautonomia, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (17) migraines, sensory issues, & some evidence of SLE's... Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3) Joey (16 months) with hydrocephalus, dysgenesis of the corpus callosum, encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays, left hemiplegia (arm)... (16 months) SID, dev. delays, right hemiparesis issues... anyone with similar symptoms? > > > > > > > > > > > > > I can't talk much with family about the symptoms I have been > having > > > (or ones my younger son experiences who is not diagnosed with > mito) > > > because they obviously think I am reading too much into things. > Only > > > here will others understand why my concerns may be justified. I > > > would like to know if other adults experience any of these > symptoms > > > or have a similar family history. > > > > > > My son is Craig, and he is 8 with unspecified mito by way of > muscle > > > biopsy. No evidence of problems with the complexes. He was > never > > > tested for maternal DNA deletions. I am not sure why at this > point, > > > but he saw Dr. Cohen who must not have felt it was warranted. > (This > > > is a question for his appt. with neurologist next week.) > > > > > > My 6 year old, Dalton, has had some abnormal test results, but > not > > > enough to diagnose anything. He had extreme fatigue that has > been > > > virtually elimated by Carnitor. We give him CoQ10 also. He has > > > become progressively more hyperactive in the past year or so. (a > > > major symptom for Craig). He has a lot of trouble overheating > and > > > has had some brief, seizure-type episodes before starting > Carnitor. > > > (Craig has seizures). Also, pain in hands, legs, wrists, etc. > before > > > Carnitor too. He seems to have memory problems. He doesn't > > > remember things we just said or did. (Craig has significant > > > problems with some kinds of memory- ie. " Where are we going again > > > Mom? " over and over, etc.) > > > > > > I will soon be 40 years old. I have been having a problem with > very > > > stiff legs at times. It makes it difficult to walk normally. I > have > > > also had trouble with my muscles tightening while laying in bed > at > > > night, and it's difficult to get them to " let go. " I have had > > > trouble walking straight in the middle of the night a few times . > > > One time I tried my darndest to get to the door to go out of the > > > room, but could not do it without falling over. I finally gave > up > > > and went back to bed. All these things come and go. > > > > > > Lately, my back quite often has pins and needles across the mid > to > > > upper section. (Perhaps this could be a chiropractic problem?) I > get > > > pins and needles in my hands and feet/legs quite a bit as well. > > > > > > The things that bothers me most, though, is that my thinking is > > > clearly not normal lately. ( Between me and the boys it's > beginning > > > to feel like a nut house around here!) I can't remember > something I > > > just did or recently said. Past events can be difficult as > well. I > > > just introduced myself to another mother at school today who > claims > > > to have met me and talked with me several times in the past! > These > > > kinds of things are happening quite frequently. I also CANNOT > stay > > > focused on what I am doing. I switch tasks constantly and forget > > > that I was doing something else until I find something cooking on > > > the stove or the dryer open waiting for clothes from the > washer,etc. > > > Our family has been under an extreme amount of stress for so long > > > (family tragedies, Craig's progressive problems, rebellious > > > teenager, on and on!) that I try to assume that is the problem. > My > > > memory does get better when things are going better. > > > > > > One more minor symptom I have is the need to urinate quite > > > frequently without any evidence of infection. This also gets > better > > > when not under as much stress. > > > > > > Sorry to be so long and detailed, but I wanted to be specific > enough > > > to get some input if possible. > > > > > > If I should see a doctor I have no idea who to see, and I wonder > if > > > things are really bad enough to go yet. We live in Michigan. > > > > > > THANKS!! > > > > > > Donna H. > > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > questions. > > > Quote Link to comment Share on other sites More sharing options...
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