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Cockayne syndrome
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Strange blood and balance and pmr?
First i have to say I am in PMR and GCA remission on no pred at the moment, touch wood. So why am I hear? i recently fell forward, a bit like a tree falling . i landed on concrete, nose first. glasses rim went into my forehead , nose went into concrete and broke. blood everywhere. it settled like
First i have to say I am in PMR and GCA remission on no pred at the moment, touch wood. So why am I hear? i recently fell forward, a bit like a tree falling . i landed on concrete, nose first. glasses rim went into my forehead , nose went into concrete and broke. blood everywhere. it settled like
doubtfully
in
PMRGCAuk
2 years ago
trying to be normal
So I’ve had restless legs syndrome for over 25 years and I had been on ropinirole at least that long. I was up to 3 mg an evening on the ropinerol and it was getting worse. when I was able to meet with a doctor here in California who is very familiar with restless leg syndrome.. I am now on oxycodone
So I’ve had restless legs syndrome for over 25 years and I had been on ropinirole at least that long. I was up to 3 mg an evening on the ropinerol and it was getting worse. when I was able to meet with a doctor here in California who is very familiar with restless leg syndrome.. I am now on oxycodone
Crazygrl
in
Restless Legs Syndrome
2 years ago
Methadone RLS RESULTS
hello, i was curious I have refractory rls and even buphenorphine and Methadone don’t do much it’s so strange my body hates me lol Has anyone taken opiates and had them not to much for u? it’s so weird how some people it saves their life some people can’t handle side effects and others it does nothing
hello, i was curious I have refractory rls and even buphenorphine and Methadone don’t do much it’s so strange my body hates me lol Has anyone taken opiates and had them not to much for u? it’s so weird how some people it saves their life some people can’t handle side effects and others it does nothing
RC723
in
Restless Legs Syndrome
2 years ago
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Advice please - Lyrica
For the last year or so I have been taking sinemet which usually relieved the RLS symptoms and enabled me to relax in the evening and sleep reasonably well. The inevitable augmentation occurred about a month ago and I have since stopped all but 1 cr25/100 an hour before bedtime. Recent evenings I spent
For the last year or so I have been taking sinemet which usually relieved the RLS symptoms and enabled me to relax in the evening and sleep reasonably well. The inevitable augmentation occurred about a month ago and I have since stopped all but 1 cr25/100 an hour before bedtime. Recent evenings I spent
Flora-Rose
in
Restless Legs Syndrome
2 years ago
Parkinsons
Was at hospital for check up and was told I had Parkinsons and to come of Pregabalin and Tramadol and star new medication tonight low dose for a week then increase second dose second week so we will see what happens just when I was okay with Pregabalin and Tramadol ,wonder about the restless legs if
Was at hospital for check up and was told I had Parkinsons and to come of Pregabalin and Tramadol and star new medication tonight low dose for a week then increase second dose second week so we will see what happens just when I was okay with Pregabalin and Tramadol ,wonder about the restless legs if
auldreekie18
in
Restless Legs Syndrome
2 years ago
pramipexole and nasal congestion.
Hi everyone, I’ve just joined this group hoping for support I was a member years ago but lost touch unfortunately. I’ve had RLS for around 12 years and i class it as moderate- severe. I’m on Pramipexole (after being on Neupro patch for ten years though I tried many medications to even get there) .
Hi everyone, I’ve just joined this group hoping for support I was a member years ago but lost touch unfortunately. I’ve had RLS for around 12 years and i class it as moderate- severe. I’m on Pramipexole (after being on Neupro patch for ten years though I tried many medications to even get there) .
HelenJS
in
Restless Legs Syndrome
2 years ago
Diagnosed with RLS but not so sure, does it sound like I have it?
My Doctor has diagnosed me with RLS and said I need to start taking some medication called ropinirole. My symptoms are: for the last 4 months or so, when I sit in an armchair (usually with may legs folded and at my side) my buttock muscles keep tensing and untensing which causes my thighs to twitch
My Doctor has diagnosed me with RLS and said I need to start taking some medication called ropinirole. My symptoms are: for the last 4 months or so, when I sit in an armchair (usually with may legs folded and at my side) my buttock muscles keep tensing and untensing which causes my thighs to twitch
ljs007
in
Restless Legs Syndrome
2 years ago
sore feet possible peripheral neuropathy.
just seen the rheumatologist who very kindly fitted me in this week. Now getting tested for peripheral neuropathy. She thinks it most likely. Various drugs have been mentioned. Going forward anyone had any issues with medications for this? I'm only on hydroxy and pilocarpine at the moment. Luckily
just seen the rheumatologist who very kindly fitted me in this week. Now getting tested for peripheral neuropathy. She thinks it most likely. Various drugs have been mentioned. Going forward anyone had any issues with medications for this? I'm only on hydroxy and pilocarpine at the moment. Luckily
dg70
in
LUPUS UK
2 years ago
Dry eye irritation
It doesn't sound much, does it, dry-eye irritation, but it's making my life an absolute misery. For two days now I haven't been able to read - my great pleasure in life - as the irritation is so bad compounded by the glare as well. Wearing dark glasses indoors is a sort of help but it's not enough
It doesn't sound much, does it, dry-eye irritation, but it's making my life an absolute misery. For two days now I haven't been able to read - my great pleasure in life - as the irritation is so bad compounded by the glare as well. Wearing dark glasses indoors is a sort of help but it's not enough
ANGIEIRISH
in
Macular Society
2 years ago
High HCG at 4 weeks (11dp5dt)... cause for concern?
Hey I wish I could just enjoy this moment but Doctor Google has terrified me again! Had my first HCG test at 9dp5dt and was delighted with 301 (especially after our chemical earlier this year ). Today's has come back as 816 so has more than doubled in 48 hours and seems very high for 4 weeks when
Hey I wish I could just enjoy this moment but Doctor Google has terrified me again! Had my first HCG test at 9dp5dt and was delighted with 301 (especially after our chemical earlier this year ). Today's has come back as 816 so has more than doubled in 48 hours and seems very high for 4 weeks when
Sarascottxox
in
Fertility Network UK
2 years ago
Late period after MMC.
After finally having our first IVF BFP following a DE FET it ended in a MMC. I had a managed miscarriage at home 7th May followed by surgery for retained tissue 31st May. I had a period 22nd June so hoped things were starting to get back to normal. I’m now on day 36 and no sign of a period 🥺.
After finally having our first IVF BFP following a DE FET it ended in a MMC. I had a managed miscarriage at home 7th May followed by surgery for retained tissue 31st May. I had a period 22nd June so hoped things were starting to get back to normal. I’m now on day 36 and no sign of a period 🥺.
Miracle43
in
Fertility Network UK
2 years ago
Methadone withdrawal without Rx
I take 15mg of Methadone two hours before my bedtime of 11pm. It is not a great cure by itself for me. I also take 1mg Nepro patch. Together it helps about 70-80%. Methadone seems like it reduces the intensity of the RLS symptoms but not the frequency. I think of it as palliative rather than therapeutic
I take 15mg of Methadone two hours before my bedtime of 11pm. It is not a great cure by itself for me. I also take 1mg Nepro patch. Together it helps about 70-80%. Methadone seems like it reduces the intensity of the RLS symptoms but not the frequency. I think of it as palliative rather than therapeutic
WelbyB
in
Restless Legs Syndrome
2 years ago
Opiods after stopping Rpinerol?
I finished taking Ropinerol about a week ago (gradually reducing the dose) but I'm still hardly getting any sleep and gabapentin isn't making any difference (I'm spacing out the dose 1200mg over several hours). I'm also taking a high strength valerian tablet and have tried CBD/THC too. Nothing seems
I finished taking Ropinerol about a week ago (gradually reducing the dose) but I'm still hardly getting any sleep and gabapentin isn't making any difference (I'm spacing out the dose 1200mg over several hours). I'm also taking a high strength valerian tablet and have tried CBD/THC too. Nothing seems
CrusoeCortez
in
Restless Legs Syndrome
2 years ago
8th day without requip now what?
Today is day 8 off requip. It is the first night I had 3.5 consecutive hours of sleep. Hopefully I will continue to improve. Despite taking 1800 mg of gabapentin stretched out over 8 hours before bedtime, 100mg of tramadol at bedtime, and a few grams of kratom at midnight when I wake up with bad
Today is day 8 off requip. It is the first night I had 3.5 consecutive hours of sleep. Hopefully I will continue to improve. Despite taking 1800 mg of gabapentin stretched out over 8 hours before bedtime, 100mg of tramadol at bedtime, and a few grams of kratom at midnight when I wake up with bad
Asquiva
in
Restless Legs Syndrome
2 years ago
Weaning off of Sinamet and Mirapex and onto Methadone
When I first started having RLS symptoms my family doctor tried to assist by giving me Sinemet and some other drug with alternating doses but it did not control the leg spasms so I started sleeping on the sofa and listening to the music of the Mystic Moods Orchestra. A fried had introduced me to their
When I first started having RLS symptoms my family doctor tried to assist by giving me Sinemet and some other drug with alternating doses but it did not control the leg spasms so I started sleeping on the sofa and listening to the music of the Mystic Moods Orchestra. A fried had introduced me to their
Tobias10
in
Restless Legs Syndrome
2 years ago
Progress ... ?
My doctor refused to give me the tests for iron deficiency that I asked for, saying that past tests showed my iron levels are fine. I contacted her again to explain how the tests I need now are different - copying out for her the relevant paragraphs from two research articles on the matter. I also sent
My doctor refused to give me the tests for iron deficiency that I asked for, saying that past tests showed my iron levels are fine. I contacted her again to explain how the tests I need now are different - copying out for her the relevant paragraphs from two research articles on the matter. I also sent
Desperate100
in
Restless Legs Syndrome
2 years ago
listening to music has transformed my sleep
I’ve suffered terribly from restless leg syndrome since I was a child. Only Having it diagnosed later in life. My RLS definitely comes and goes but when it’s at it’s peak it keeps me up in the night in levels of discomfort only a fellow RLS sufferer can understand. Recently I purchased some wireless
I’ve suffered terribly from restless leg syndrome since I was a child. Only Having it diagnosed later in life. My RLS definitely comes and goes but when it’s at it’s peak it keeps me up in the night in levels of discomfort only a fellow RLS sufferer can understand. Recently I purchased some wireless
LoulouPet
in
Restless Legs Syndrome
2 years ago
Go back on Pramaprexol?
I was on Miropex/Pramaprexol for 15 years for RLS until I augmented late 2021. I phased out the Pramapexol slowly as recommended by this site and Mayo Clinic(complete hell),as I began Gabapentin. I hated the side effects so switched to Pregabalin,which I also hated. I now take 100 MG of Tramadol
I was on Miropex/Pramaprexol for 15 years for RLS until I augmented late 2021. I phased out the Pramapexol slowly as recommended by this site and Mayo Clinic(complete hell),as I began Gabapentin. I hated the side effects so switched to Pregabalin,which I also hated. I now take 100 MG of Tramadol
SteveWess
in
Restless Legs Syndrome
2 years ago
Just received the full copy of my blood test where I can see my TSI
My TSI is 1.20 (0.00 - 2.00) Does it mean that I ddi not have Graves and RAI is not right treatment for me? Thank you very much for your opinions.
My TSI is 1.20 (0.00 - 2.00) Does it mean that I ddi not have Graves and RAI is not right treatment for me? Thank you very much for your opinions.
femme12000
in
Thyroid UK
2 years ago
buprenorphine for RLS
I have been trying doses of suboxone for RLS. for some people it is magic that gives them there life back. I took all the way up to 8 mg and it didn’t do much 🫤 I don’t get it. We are more experts than the doctors so my question is, does anyone have any clue why 8 mg of buprenorphine would not
I have been trying doses of suboxone for RLS. for some people it is magic that gives them there life back. I took all the way up to 8 mg and it didn’t do much 🫤 I don’t get it. We are more experts than the doctors so my question is, does anyone have any clue why 8 mg of buprenorphine would not
RC723
in
Restless Legs Syndrome
2 years ago
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