Guest guest Posted June 8, 2006 Report Share Posted June 8, 2006 MQ I can't help you with this, but want to welcome you to the group. I think you are new - if not, welcome again. laurie > > > > > > > > I am 33-year-old woman with chief symptoms of hearing > > loss (sensineural deafness), vision loss (optic > > atrophy) and ataxicgait. Though doctors at PGI, > > Chandigarh, India, had diagnosed my condition as Fredrich's > > Ataxia, later genetic tests did not confirm the > > diagnosis. So at present there is no confirmed > > diagnosis, though some doctors think that I maybe > > suffering from some kind of Mitrochondrial disorder. > > In 2001, a neurologist settled in United States had suspected that I maybe > suffering from Refsum's disease. But the amount of phytanic acid were > normal. The test was done at Kennedy Kreiger Institute, Peroxisomal Diseases > Laboratory, Baltimore. This was the conclusion of the test: > > The amount of phytanic acid is normal. The amounts of C26:0 and C22:1 are > slightly higher than the normal control range, and the ratio of C26/C22 is > in the upper normal range. Dietary supplementation with C22:1 can lower > plasma very long chain fatty acid levels. > > None of the neurologists I consulted have suggested dietary supplementation > with C22:1. Can anybody tell me what is C22:1 and where can I get hold of > it? Will it help my symptoms? Can anybody give me email id of any > neurologist in the USA or other countries who could help me? > > At present I am experiencing a lot of visual disturbances, smoky vision, > flashes and visual snow like disturbance in a TV. > > Any information would be helpful. > > Regards > MQ. > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2007 Report Share Posted May 31, 2007 Hey guys, wass wondering if anybody else has experienced this kind of problem. Back in Oct. of 06 I saw the eye doc for annual check u0p, and talked with him about a bright light spot in my right eye that had just kind of popped up one day, he had no answers and since it wasnt really bothering me much so I forgot about it. No real changes until last couple of weeks when the spot went from the size of a pencil eraser in the center of my field of vision to nearly 1/2 of the field by the end of this last weekend. Then Monday I noticed that I was having trouble seeing clearly and now my right eye which was nearly perfect vision in Oct. is so blurry I caqnt read a 1 inch letter from three feet away, Im getting headaches from the difference in my eyes and I get dizzy because its almost like one eye is seeing at one distance and the other much closer up, faces and even television had an odd break between the two images that almost looks like a line. Ok I know it sounds really weird, mostly becausee it is, but then so am I! Called my Neuro yesterday but havent heard back, and this headache is killing me, think Ill go find an innocent young puppy to kick! (or maybe my sixteen year old son, yeah! he likes being kicked))))))) Well anyway if anyone has any idea what is going on Id sure appreciate your ideas. Stu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2007 Report Share Posted May 31, 2007 No real changes until last couple of weeks when the spot went from the size of a pencil eraser in the center of my field of vision to nearly 1/2 of the field by the end of this last weekend. Then Monday I noticed that I was having trouble seeing clearly and now my right eye which was nearly perfect vision in Oct. is so blurry I caqnt read a 1 inch letter from three feet away, Im getting headaches from the difference in my eyes and I get dizzy because its almost like one eye is seeing at one distance and the other much closer up, faces and even television had an odd break between the two images that almost looks TO HELL WITH THE NEURO!!! GETYOURSELF INTO THE OPHTHALMOLOGIST-- TELL THE OFFICE WHAT IS HAPPENING AND GET IN TOMORROW!!!!!! LOSING CENTRAL VISION IS A CLEAR SIGN OF MACULAR HEMORAGE OR DETACHMENT, AND IF LEFT UNTREATED, YOU'VE LOST THAT VISION PERMANENTLY. IF IT WASN'T ALREADY AFTER HOURS-- I'D INSIST YOU GET IN TONIGHT-- THIS IS SERIOUS-- AND CAN STILL BE ADDRESSED. FYI-- LOSS OF PERIPHERAL VISION IS GLAUCOMA. LOSS OF CENTRAL VISION IS A DETACHED RETINA OR MACULA HOLE. SINCERELY, TRACIE NS CO-OWNER/MODERATOR************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2007 Report Share Posted May 31, 2007 Stu, I don't know what it is, but my guess is that our eye expert, Tracie, will be telling you to run, not walk, to the opthamologist (maybe you need a different one; this guy doesn't seem like the sharpest tack in the package.) Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: vision problemsDate: Thu, 31 May 2007 19:05:16 -0000 Hey guys, wass wondering if anybody else has experienced this kind ofproblem. Back in Oct. of 06 I saw the eye doc for annual check u0p,and talked with him about a bright light spot in my right eye that hadjust kind of popped up one day, he had no answers and since it wasntreally bothering me much so I forgot about it.No real changes until last couple of weeks when the spot went from thesize of a pencil eraser in the center of my field of vision to nearly1/2 of the field by the end of this last weekend. Then Monday Inoticed that I was having trouble seeing clearly and now my right eyewhich was nearly perfect vision in Oct. is so blurry I caqnt read a 1inch letter from three feet away, Im getting headaches from thedifference in my eyes and I get dizzy because its almost like one eyeis seeing at one distance and the other much closer up, faces and eventelevision had an odd break between the two images that almost lookslike a line. Ok I know it sounds really weird, mostly becausee it is, but then soam I! Called my Neuro yesterday but havent heard back, and thisheadache is killing me, think Ill go find an innocent young puppy tokick! (or maybe my sixteen year old son, yeah! he likes beingkicked)))))))Well anyway if anyone has any idea what is going on Id sure appreciateyour ideas.Stu PC Magazine’s 2007 editors’ choice for best Web mail—award-winning Windows Live Hotmail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2007 Report Share Posted June 1, 2007 Stu, I had the flashing bright light in the corner of one of my eyes recently. My eye specialist put me on about 20 mg of Prednisone and some Pred Forte eye drops. I am off the prednisone but still using the drops. Please get it checked out and before anything gets worse. Shauna Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. Quote Link to comment Share on other sites More sharing options...
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