Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Ellen - your symptoms are almost identical to mine with the exception of I haven't been hospitalized for obstruction or anything like it although I have had some episodes of that type of thing - just not very severe. Also haven't had pneumonia or some of the other complications you have had - but your neuro symptoms are very similar to mine - urinary retention secondary to neurogenic bladder, "stockinglove" numbness, although mine is not exactly that when actually tested, but that's the way it "feels" to me, extreme atrophy and weakness in my hands and feet, generalized "fatigueability" although mine is more exercise intolerance type of thing. I'm not particularly "weak" (other than selected muscles like in my hands) if they do a muscle test - but watch the muscles fatigue out if I do anything repetitive or sustained. I also have documented cognitive problems with a brain MRI that supports generalized atrophy (they estimate that I have about "75%" of the grey matter that I had 3 years ago by MRI - and it shows cognitively - although I can hide it fairly well) I have not as yet been tested formally for mito - I'm seeing a Dr. Barohn in Kansas City who is with KU Med center and apparently has worked out of the Dallas center. At least one of our local adults with mito has been to see him. So, we'll see what he has to say in a few weeks. I think I've had the appointment now for about 3 months. It is the end of July. Anne (the PT) Original Message: Date: Wed, 10 Jul 2002 04:54:22 -0000 Subject: Possible mngie diagnosisHi My Name is Ellen. My neurologist suspects I have mngie, but I wasunable to confirm it with my muscle biopsy. My neurologist was unableto get a clear picture on what test were done at Columbia University.A little history, I had mild neurological problems in my mid 20. Myfirst neurologist sent me to a specialist is neuromusclar disorders.He wasn't impressed with me, but requested that I return in a year.Before my return visit, I had an aappendectomy that was verycomplicated. I was sent home to be re-admitted in less then a monthfor another 2 weeks. Followed by at least a week in the hospital amonth for about 8 months. My diagnosis was small bowel obstructioneach time. With each hospitalization I was having significantproblems walking. My surgeon requested that I return to myneurologist. He connected all my problems and gave me the possiblediagnosis of mngie. (This was 6 years ago). We have been unable toconfirmed this diagnosis. He now wants me to go to a mitochodrialcenter.My current affected systems: gait abnormalities requiring AFO (bracealmost to my knees), atrophy of muscles of hands and feet, decreasedsensation in stocking glove distribution as well as visceral areas,urinary retention without sensation for distention requiringintermittent self-catheterization, generalized muscle fatigability,markedly weakened GI peristalsis with documented pseudo-obstructions.Celiac sprue based on 2 endoscopic biopsies without symptoms orimprovement on gluten free diet. Iron deficiency due to malabsorptionrequiring iron infusions. Pneumonia 6 times and raynaud's syndrome.I have a lot of abnormal lab that different specialist didn't were toobad. A normal MRI and spinal tape.I am currently on a gluten free, low fat, and low fiber diet thatkeeps me generally out of the hospital. I am looking for others withsimilar symptoms and finding out how succeful they were with bGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Anne Thank you for the information on your experience. Ellen Quote Link to comment Share on other sites More sharing options...
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