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Re: RLS-UK/Ekbom Association ( was ESG) (Ekbom) Website
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Beverley Finn
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Oct 17, 2008 13:29 PDT
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Hello Liz,
I am e-mailing you again as I received news that the patch will not be launched until Jan or Feb 09. Sorry, but I was given the incorrect information.
B.W.Beverley
----- Original Message ----
From: Ekbom Topica <bev.-@yahoo.co.uk>
To: ekbomsuppo-@topica.com
Sent: Wednesday, 1 October, 2008 22:04:27
Subject: RE: RLS-UK/Ekbom Association ( was ESG) (Ekbom) Website
Hello Liz,
I was just going through old e-mails to see what I could delete. On your e-mail you were asking about the 24hr Patch. I can confirm it was licensed on September 13th 08.
B.W.
Beverley
----- Original Message ----
From: Bob Suggett <bob.su-@btinternet.com>
To: ekbomsuppo-@topica.com
Sent: Monday, 23 June, 2008 10:43:22
Subject: Re: (Ekbom) Website
Hi Beverley
Can you give us any more information about this 24 hour patch, it sounds interesting.
Kind Regards
Liz
----- Original Message -----
From: Beverley Finn
To: ekbomsuppo-@topica.com
Sent: Sunday, June 15, 2008 12:04 PM
Subject: Re: (Ekbom) Website
Hello Sandra, I have read your e-mail on the web. Don't give up hope I know this is an awful illness I have had it for more years than I care to remember. There is a 24 hr patch to be licensed later this year and that may help you.
Best wishes
Beverley
----- Original Message ----
From: Sandra Broughton <san-@broughton2304.freeserve.co.uk>
To: ekbomsuppo-@topica.com
Sent: Tuesday, 10 June, 2008 3:25:28 PM
Subject: Re: (Ekbom) Website
Hi Lynda
After 10 years, at times almost wanting to kill myself, I got to see a neurology specialist who was lovely (and who I have just found out retired last month!). He actually listened, empathised and tried the Parkinson drugs I had told my doctor about 3 years earlier who denied any knowledge of them! Unfortunately I have tried 3 types and one now withdrawn and also epilepsy drugs but nothing helps. I now have Parkinson type twitches at bedtime as a side effect! I tend at the moment to take two codeines, one tramadol, one parky drug and then my legs go nuts for one to 3 hours. I then take another one or two codeine and I can usually nod off for a while. I also get it in my arms when it is bad. I am so fed up with it, the not sleeping, not being able to sit anywhere (theatre, cinema, plane etc) more than 45 minutes without them kicking off, having to sleep in a separate room from my partner (who takes it personally!) etc - sometimes I wonder,
along with the pain of my back, cramps, osteoporosis etc whether I want to carry on. I am only 45 and have been dealing with this for 10 years now. I keep fit as I teach pilates, core stability, Nordic walking and I am also a gym instructor and nutrition advisor so I know about keeping healthy and I hate the mix of drugs I'm on as above including asthma meds, HRT, osteo tablets etc. I feel so sleepy nowadays but can't!!!! It's nice at last to be able to speak to people who know how I feel.
Sandra Broughton
----- Original Message -----
From: Lynda Kinzey
To: ekbomsuppo-@topica.com
Sent: Tuesday, June 10, 2008 1:13 PM
Subject: RE: (Ekbom) Website
hi Sandra,
The website is rlshelp.org but it sounds like you have been through the list of suggested drugs. I tried painkillers for the first time last week, but they only seemed to help as the torture returned after three nights. I shall continue taking them for a while along with vitamin and mineral supplements, as at least my legs are not quite as bad as before. Unfortunately my doctor offered no help at all other than giving me the address of a website that is no longer available!
Lynda Kinzey
________________________________
To: ekbomsuppo-@topica.com
From: san-@broughton2304.freeserve.co.uk
Subject: Re: (Ekbom) Website
Date: Wed, 4 Jun 2008 19:53:15 +0100
Hi
What website are you referring to? I am near the end of my tether on parky drugs, codeine and tramadol!!!!
Sandra Broughton
07966 988363
----- Original Message -----
From: Sue
To: ekbomsuppo-@topica.com
Sent: Wednesday, June 04, 2008 6:18 PM
Subject: Re: (Ekbom) Website
Yes it is very good. I have also tried drug holidays as suggested and this has helped me to keep on track with the advice received from Prof C.
Sue
----- Original Message -----
From: Lynda Kinzey
To: ekbomsuppo-@topica.com
Sent: Wednesday, June 04, 2008 12:05 PM
Subject: RE: (Ekbom) Website
Dear Sue,
Thank you so much for your e-mail. I have looked at the site you recommended and found it much more
useful than anything I have been able to find! I am trying pain killers at the moment as suggested on this
site. Fingers crossed it continues, but i have had two torture free nights so far.
Many thanks again,
Lynda Kinzey
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