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Gorlin syndrome
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Christopher
Hi there. Thank you for letting me join the group. 6 years ago I was diagnosed with stage 5 kidney disease and am on regular dialysis. I have since developed restless leg syndrome which has got steadily worse. Pramipexole was prescribed but honestly doesn't help much. As soon as I sit down to relax it
Hi there. Thank you for letting me join the group. 6 years ago I was diagnosed with stage 5 kidney disease and am on regular dialysis. I have since developed restless leg syndrome which has got steadily worse. Pramipexole was prescribed but honestly doesn't help much. As soon as I sit down to relax it
Migennes
in
Restless Legs Syndrome
5 months ago
Side effects of Buprenorphine
Several persons on this site have already helped me but I want to ask the general following about the use of Buprenorphine for treatment of RLS. and its augmentation After testing in vain, pregabalin, oxycodone several other less well advertised RLS treatments I got agreement from my GP to try Buprenorphine
Several persons on this site have already helped me but I want to ask the general following about the use of Buprenorphine for treatment of RLS. and its augmentation After testing in vain, pregabalin, oxycodone several other less well advertised RLS treatments I got agreement from my GP to try Buprenorphine
davchar23
in
Restless Legs Syndrome
5 months ago
Opioids
Have been following posts, have studied Mayo Clinic, been back to rlshelp.org Have read Dr Earlys research , follow several Rls groups . I have done the DAs (unfortunately) The side effects of Gabapentin and Pregabalin far out way the benefits. Iron is good, I get infusions as needed. I use Magnesium
Have been following posts, have studied Mayo Clinic, been back to rlshelp.org Have read Dr Earlys research , follow several Rls groups . I have done the DAs (unfortunately) The side effects of Gabapentin and Pregabalin far out way the benefits. Iron is good, I get infusions as needed. I use Magnesium
RLSdaily
in
Restless Legs Syndrome
5 months ago
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Transitioning to Gabapentin Enacarbil
I need some advice when it comes to starting Horizant while moving away from Pramipexole. I've been on Pram for about 12 years and although it still works generally, it's getting less an less effective. So it's time to move on. Gabapentin Enacarbil (Horizant) is what I'm moving to. My question
I need some advice when it comes to starting Horizant while moving away from Pramipexole. I've been on Pram for about 12 years and although it still works generally, it's getting less an less effective. So it's time to move on. Gabapentin Enacarbil (Horizant) is what I'm moving to. My question
grizzly99
in
Restless Legs Syndrome
5 months ago
Low platelets
Hello and thanks to contributors for the all the past useful information and support. Very much appreciated. My GP has now asked me to give Pramipexole a try as both Gabapentin and Pregabalin seem to have caused an unacceptable reduction in platelets. The negative correlation is fairly conclusive.
Hello and thanks to contributors for the all the past useful information and support. Very much appreciated. My GP has now asked me to give Pramipexole a try as both Gabapentin and Pregabalin seem to have caused an unacceptable reduction in platelets. The negative correlation is fairly conclusive.
Johan10
in
Restless Legs Syndrome
5 months ago
16 week midwife appointment
I went for my 16 week midwife appointment yesterday. All she did was BP and check my urine was kind of hoping she would check for babies heartbeat with the doppler but no. Is this normal? I have a high risk pregnancy for various reasons but main one being twins so just a bit worried. The rest of my appointments
I went for my 16 week midwife appointment yesterday. All she did was BP and check my urine was kind of hoping she would check for babies heartbeat with the doppler but no. Is this normal? I have a high risk pregnancy for various reasons but main one being twins so just a bit worried. The rest of my appointments
Tarasunny
in
Pregnancy and Parenting Support
8 months ago
Methadone
Hello, 3 days ago I started methadone. Started with 2.5 mg on the first night. It didn’t help my rls completely, so the next night I took a whole pill, 5 mg. From an rls perspective, working great. I am not getting breakthrough rls, which is awesome! But I am not sleeping well. I have many short
Hello, 3 days ago I started methadone. Started with 2.5 mg on the first night. It didn’t help my rls completely, so the next night I took a whole pill, 5 mg. From an rls perspective, working great. I am not getting breakthrough rls, which is awesome! But I am not sleeping well. I have many short
Lespenney
in
Restless Legs Syndrome
5 months ago
Does anyone have any direct experience of Targinact?
Hi Everyone, this is my first post but I've been reading everything on this forum for a while now. I'm in real trouble with augmentation after taking ropinirole for 11 years. I successfully tapered off and was completely free of it by April 2023, however the RLS remained severe, and in October I decided
Hi Everyone, this is my first post but I've been reading everything on this forum for a while now. I'm in real trouble with augmentation after taking ropinirole for 11 years. I successfully tapered off and was completely free of it by April 2023, however the RLS remained severe, and in October I decided
Claire_lc
in
Restless Legs Syndrome
5 months ago
autoimmunity
I went to Laurie Mischley’s alumni camp in August. One of the Labs that I decided to get done called Nuro zoomer I believe, had an interesting result. Turns out I have auto immunity to my glycine receptors. There’s not a whole lot about this online, but apparently in some cases it can cause parkinsonism
I went to Laurie Mischley’s alumni camp in August. One of the Labs that I decided to get done called Nuro zoomer I believe, had an interesting result. Turns out I have auto immunity to my glycine receptors. There’s not a whole lot about this online, but apparently in some cases it can cause parkinsonism
rebtar
in
Cure Parkinson's
8 months ago
Ropinerol withdrawal.... what now?
So after 15 years I'm off Requip. I'm now 4 days in with zero meds for RLS. A few contradictions of how long it takes to fully leave your system, however, I was hoping that my RLS would magically disappear along with my meds. Unfortunately, thats not been the case. Cannabis didn't help, it just left
So after 15 years I'm off Requip. I'm now 4 days in with zero meds for RLS. A few contradictions of how long it takes to fully leave your system, however, I was hoping that my RLS would magically disappear along with my meds. Unfortunately, thats not been the case. Cannabis didn't help, it just left
Boofoo71
in
Restless Legs Syndrome
5 months ago
Oxycodone - the way forward or a dead end?
I have only posted here briefly once but I have been following this great forum for some time. My story is very familiar. Have had RLS for 14 years, was prescribed all the available RLS medication: Ropinirole, Pramipexole (both miraculous at the beginning) Neupro patch ( never tolerated it), Gabapentin
I have only posted here briefly once but I have been following this great forum for some time. My story is very familiar. Have had RLS for 14 years, was prescribed all the available RLS medication: Ropinirole, Pramipexole (both miraculous at the beginning) Neupro patch ( never tolerated it), Gabapentin
etchea33
in
Restless Legs Syndrome
5 months ago
Ropinirole vs Buprenorphine!
I had a phone call from 1 Dr. who told me that Ropinirole would cure my RLS and was annoyed that I wouldn't take them. He decided to get the head of the Surgery to phone me to try to put pressure on me ! I did say that the 10 mcg had helped me a little bit but I would like a stronger patch . A few day's
I had a phone call from 1 Dr. who told me that Ropinirole would cure my RLS and was annoyed that I wouldn't take them. He decided to get the head of the Surgery to phone me to try to put pressure on me ! I did say that the 10 mcg had helped me a little bit but I would like a stronger patch . A few day's
Danni54
in
Restless Legs Syndrome
5 months ago
RESTLESS LEGS SYN
hello everyone I first experienced RLS 40 years ago most GPs had no idea and prescribed sedatives which were totally wrong for this condition I have managed it through other things ie walking on cold floor massage and been successful 5O % of the time until recently and the symptoms have worsened …a
hello everyone I first experienced RLS 40 years ago most GPs had no idea and prescribed sedatives which were totally wrong for this condition I have managed it through other things ie walking on cold floor massage and been successful 5O % of the time until recently and the symptoms have worsened …a
2024legs
in
Restless Legs Syndrome
5 months ago
Low dose Naltrexone or Suboxone. I'm seeing my doctor this week. Which one is best
After many years of RLS and coping quite well. First the dreaded mirapexin and then tramadol nothing is working at the moment. I was on 0.09 mg mirapexin. Now I'm on 50mg tram. Even if I take 100mgs it's not working so I'm obviously augmenting. Even Kratom isn't helping. I made an appointment with my
After many years of RLS and coping quite well. First the dreaded mirapexin and then tramadol nothing is working at the moment. I was on 0.09 mg mirapexin. Now I'm on 50mg tram. Even if I take 100mgs it's not working so I'm obviously augmenting. Even Kratom isn't helping. I made an appointment with my
Coeso
in
Restless Legs Syndrome
5 months ago
Sorbolene Lotion experience and my RLS
I was prescribed Sorbolene Lotion for my lower legs for dry skin - had very bad dry skin that was basically permanent. Anyway, I found that my restless legs disappeared after applying the cream. The cream is essentially just a moisturiser - says it has glycerine and vitamin E in it. I was applying it
I was prescribed Sorbolene Lotion for my lower legs for dry skin - had very bad dry skin that was basically permanent. Anyway, I found that my restless legs disappeared after applying the cream. The cream is essentially just a moisturiser - says it has glycerine and vitamin E in it. I was applying it
bernardnz
in
Restless Legs Syndrome
5 months ago
Restless leg syndrone
I am new on this forum and am suffering like hell with augmentation. I've had RLS slightly since I was 27 now 74. GP diagnosed cramp in those early days and told me to drink tonic water. Things got worse and saw a neurologist (at my expense) some 12 years ago and put me on Rotigotine patch 1mg. Things
I am new on this forum and am suffering like hell with augmentation. I've had RLS slightly since I was 27 now 74. GP diagnosed cramp in those early days and told me to drink tonic water. Things got worse and saw a neurologist (at my expense) some 12 years ago and put me on Rotigotine patch 1mg. Things
Marmot2
in
Restless Legs Syndrome
5 months ago
hopful2
I saw Dr Scott Cooper this morning and I am hopeful that he will help me. He was familiar with augmentation and was very thorough is his examination. He has ordered a full iron panel and checking B12 and magnesium levels. In all he is doing 3 panels. He is also doing nerve conductivity test. He said
I saw Dr Scott Cooper this morning and I am hopeful that he will help me. He was familiar with augmentation and was very thorough is his examination. He has ordered a full iron panel and checking B12 and magnesium levels. In all he is doing 3 panels. He is also doing nerve conductivity test. He said
6236
in
Restless Legs Syndrome
5 months ago
Phenelzine
it worked for me incredibly well. No restless legs going on2 years. Phenelzine is a maoMao inhibitor with the differencethaydifference that it only raises dopamine in the central nervous central system. LIfe changer for me, but make you talk to a drDr, so many medicines can interact.
it worked for me incredibly well. No restless legs going on2 years. Phenelzine is a maoMao inhibitor with the differencethaydifference that it only raises dopamine in the central nervous central system. LIfe changer for me, but make you talk to a drDr, so many medicines can interact.
toobs1234
in
Restless Legs Syndrome
5 months ago
UK Hospitals-Dopamine Agonists
I just had an appointment with a head pharmacist at St George's hospital in Tooting, London about my next MS drug treatment.We somehow got onto the subject of RLS and he surprised me by actually knowing about the disease and that dopamine agonists are bad news. He said that St George's do NOT prescribe
I just had an appointment with a head pharmacist at St George's hospital in Tooting, London about my next MS drug treatment.We somehow got onto the subject of RLS and he surprised me by actually knowing about the disease and that dopamine agonists are bad news. He said that St George's do NOT prescribe
Joolsg
in
Restless Legs Syndrome
5 months ago
The answer I received from my concern about the treatments on the RLS Foundation website
My email to Karla Dzienkowski, who is Executive Director of the Restless Legs Syndrome Foundation: Recently a post on the forum indicated that Dr. John Winkleman has set up a site for health professionals to learn about RLS at rlscurbside.org/resources/. Naturally I went out there and was quite disturbed
My email to Karla Dzienkowski, who is Executive Director of the Restless Legs Syndrome Foundation: Recently a post on the forum indicated that Dr. John Winkleman has set up a site for health professionals to learn about RLS at rlscurbside.org/resources/. Naturally I went out there and was quite disturbed
SueJohnson
in
Restless Legs Syndrome
5 months ago
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