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Current Question Kugelberg_Welander misdiagnosis
My daughter was diagnosed with Kugelberg-Welander 20 years ago at 14/15. She had very suddenly become very weak in the legs and arms. She could not get up from a sitting position nor haul herself out of the swimming pool. After the diagnosis we saw a geneticist who took one look at the notes and said he thought it highly likely this had been a misdiagnosis as the various consultants were unlikely to have seen a case. So we left it at that and she began to improve. I had a few words with researchers at the university I worked at then and this improvement seemed unlikely if it was KW. Anyway now she is pretty well OK but does still seem to be weaker in arms and legs than "normal" and gets very tired. Also we both used one of those leaf hoover things and her arms were tingling and quivering after quite a short while where I had no such effect (I´m nearly 60) after a lot longer. She doesn´t feel the need to get a new diagnosis but I was curious if anyone here recognised this series of events especially as she now has a son and would like another child one day. Thanks, Anne
Posted: Mon Dec 17, 2007 2:33 pm
  Author:
Annem

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