Guest guest Posted July 28, 2005 Report Share Posted July 28, 2005 Hello ann I have had en going on 18 years on and off and you are right there is not enough known about en most Gp have not got a clue as not many of them have seen en, I was diagnosed in 1988 was rushed to university hospital in cardiff south wales where I was lucky that the professor there knew about en and I was in hospital for 6 weeks in all rhumatic fever had triggered my en off then but for 18 years I have flare ups a number of times a year some bad some mild, the only problem now is finding a doctor who knows what is happening when I tell them what is wrong with me the first thing they do is look it up in a book, I have had doctors blame my weight and other things for the en I am in a catch 22 situation I have osteo athritis in my back I have now been told I have athritis in my ankles and knees so walking as an excercise is impossible I used to swim which I love we went swimming on holiday and my husband had to help me as when I came out I could hardly walk its alright in the water but when I come out it is agony only a year ago I was swimming 50 lenghts a day but now I cannot even manage a full length,I share your frustration I hope you find someone who can help take care annw1952 wrote: Hi,Thanks for letting me join your group.I visit my Doctor's surgery for blood tests (dapsone problems) every month and I visit my specialist every three months. I have had a brief look through your data base (but will spend more time in future having a good look) and the next time i see the specialist i will give them some of the details i am picking up from yourselves. My Doctor has no idea of what is wrong with me ( he is a G.P - and very busy) had no idea what effect the Dapsone has on me, and neither does any one else. It seems that i am "fobbed off" when i ask if this pain or swelling etc could be dapsone related or EN related. Its due to my weight, or due to smoking or due to lack of exercise (i can't walk very well some days - but I do try and exercise . No one can help me and its so frustrating. I get red lumps under the skin about the size of 15cm - i think - not good at measurements - sorry. i get three or four at the same time on lower right leg at the moment. I have another two lumps coming up behind my knee.ThanksAnn Whicker xxxx Yahoo! Messenger NEW - crystal clear PC to PC calling worldwide with voicemail Quote Link to comment Share on other sites More sharing options...
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