TonyEvans
1 post
Nov 24, 2007
1:54 PM
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Hi all just thought I would introduce myself. My name is Tony and im from Cardiff in South Wales aged 34
I Have been a LEMS sufferer since 1993 Diagnosed in 1995 by Prof Newsom-Davis after the university hospital where I live had failed to to diagnose it and sent me to Oxford in a last ditch attempt to find out what was wrong with me, to this day im still shocked as even before I had shaken the profs hand he told me what was wrong with me. Think it took him around 20 seconds what a hospital could not do in 2 years.
For the last 12 years ive been taking steroids 55mg every other day, azathiaprin 150mg daily and 5x20mg 3/4dap daily I have had no other treatments.
while taking the drugs ive had 2 cataracs removed a DVT which I now take warfarin for and have been told I will be on it forever.
As for my overall health I have a bad case of LEMS I walk with a crutch can walk 50-60 yards as it affects my legs really bad.
Well enough of that now and I hope I havent bored you all too much
Tony
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bobtmf
239 posts
Nov 25, 2007
12:29 AM
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Hello Tony
welcome to the forum, nobody will ever be bored listning to new members.
It's good to know you had the chance to visit Oxford to help you they are truly amazing so i hear.
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Bob Barron
Margate Kent UK
Last Edited on 25-Nov-2007 12:30 AM
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kerryW
102 posts
Nov 25, 2007
10:24 AM
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Hi tony,
Have you ever attended our branch meetings in Whitchurch. we meeet approx every three months and if you are on the MGA data base you should receive notification through the post. It would be great to meet you. My husband has CMS and is the secretary. We'd be glad to keep you informed. There is xmas meal in swansea on the 8th Dec if you are interested ?
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Kerry from Cardiff
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mrloz
12 posts
Nov 28, 2007
9:55 AM
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Hi Tony, glad to hear from you. Though many people read the boards every day not everyone feels able to reply but all sympathise I think! I just wanted to say that after my MG diagnosis in June 06 I was put on 60 mg of steroids evry day and suffered pains in my legs and weakness meaning I stumbled a lot and couldn't walk very far at all. Prof J ND also saw me and thought it might be a reaction to the steroids (steroid myopathy) and started to reduce the dose. As the dose went down the legs gradually got better though the face and swallowing got gradually worse; I'm on 15 mg on alternate days now (with aza too) and can cope reasonably well. Why not discuss with your neuro the idea of slowly reducing the steroids? Very best of luck, Laurence
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destin
41 posts
Jun 23, 2009
3:09 AM
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Hello,
mrloz you are talking for steroid myopathy, but does anyone knows when it is possble to have steroid myopathy?Somewhere i read that if you take high dose / what does it mean high dose ? / of steroids for a long period?
I am taking prednisolone for about 2 years, but the highes dose i have been taken is 30mg for 3-4 months at all and after that slwly reducing them but can not stop at all.
Now i have weakness in the legs and nobody can tellme is that MG or myopathy.
Now the doctos decrease the prdnisolone again to 25mg per day, so will see.
Can these i think not very high dose can affect myopathy?
Thank you
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Marita
113 posts
Jun 23, 2009
7:33 AM
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WElcome Tony.
I am sorry to hear that you struggle so with LEMS but glad that you have such a great doctor taking care of you. It is so important.
Keep us posted. You have brought up an important subject. Never a bore--Thank you.
Marita
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sally1louiselouise
767 posts
Jun 23, 2009
11:32 AM
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Somewhere along the way I seem to have missed this one and only posting by Tony, which was nearly two years ago. With respects to all concerned, as Tony states the University Hospital where he lives failed to diagnose his condition, this is the same University Hospital where I was treated very successfully, though I should state my treatment was 10 years later than when Tony was trying to get a diagnosis, so looks like things have improved there in that time, medical advancements also improved, maybe different doctors there, but I am one very grateful patient who was treated at this hospital and treated very successfully.
Tony was indeed very lucky to have met Prof J Newsom Davis.
SALLY
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Margaret
South Wales
UK
Last Edited on 23-Jun-2009 11:37 AM
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