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Hoyeraal-Hreidarsson syndrome
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Erosion of a historically good marriage due to my FND
After a year’s onset of various symptoms, I was diagnosed with FND July 2021. Thanks be to God that I live near a world renown hospital and have a cutting-edge neurologist who is a movement specialist My husband is not responding well to this. He refuses to read any of the literature and doctor notes
After a year’s onset of various symptoms, I was diagnosed with FND July 2021. Thanks be to God that I live near a world renown hospital and have a cutting-edge neurologist who is a movement specialist My husband is not responding well to this. He refuses to read any of the literature and doctor notes
HenriettaPoultryfoot
in
Functional Neurological Disorder - FND Hope
3 years ago
tramadol does it work
Hi , Merry Xmas to everyone another year of hell survived with this curse ,on pramipexole for years not working well now thinking of going on tramadol whats your views ,what difference if it is addictive at 83 not long to go so make them better. tried Gabapenton not for me as well as pregabelon appreiate
Hi , Merry Xmas to everyone another year of hell survived with this curse ,on pramipexole for years not working well now thinking of going on tramadol whats your views ,what difference if it is addictive at 83 not long to go so make them better. tried Gabapenton not for me as well as pregabelon appreiate
auldreekie18
in
Restless Legs Syndrome
3 years ago
Support group in the US?
Hello Everyone! Is there a support group for the US? I’ve been diagnosed with hyper mobility spectrum disorder and in July I see a geneticist for EDS testing. Thank you!
Hello Everyone! Is there a support group for the US? I’ve been diagnosed with hyper mobility spectrum disorder and in July I see a geneticist for EDS testing. Thank you!
TurquoiseTime
in
Ehlers-Danlos Support UK
3 years ago
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Chronic fatigue
Hi There. Just a random question. Before I was diagnosed with endometriosis one of the symptoms I suffered with chronic fatigue. In November 2021 I had my laparoscopic surgery, all went well. After two months I am still suffering with chronic fatigue, no energy whatsoever. Can you still suffer with chronic
Hi There. Just a random question. Before I was diagnosed with endometriosis one of the symptoms I suffered with chronic fatigue. In November 2021 I had my laparoscopic surgery, all went well. After two months I am still suffering with chronic fatigue, no energy whatsoever. Can you still suffer with chronic
Cockapoo-2016
in
Endometriosis UK
3 years ago
How long to wait for a tracheotomy
Hello. So my brother has been weaned off sedation abit. However he has been becoming distressed- not surprising as he has a tube down his throat and the nurses have told him where he is. He is still not fully unsedated - his partner is struggling as she showed him a picture of their daughter but he was
Hello. So my brother has been weaned off sedation abit. However he has been becoming distressed- not surprising as he has a tube down his throat and the nurses have told him where he is. He is still not fully unsedated - his partner is struggling as she showed him a picture of their daughter but he was
paris2021
in
ICUsteps
3 years ago
Sjogren's diagnosis
I've finally been given a diagnosis of Sjogren's at last after being referred to rheumatology in 2019 Rheumatology are starting me on hydroxychloroquine to see how I go.It was nice to be listened to and get some answers
I've finally been given a diagnosis of Sjogren's at last after being referred to rheumatology in 2019 Rheumatology are starting me on hydroxychloroquine to see how I go.It was nice to be listened to and get some answers
Kels1974
in
NRAS
3 years ago
Zinc deficiency
Hi all, I found out i have a zinc deficiency. I have PA and also exocrine pancreatic insufficiency. I am also currently suffering from chronic sinusitis and tinitus. Do any of you have any experience of zinc deficiency? I had a commercial genetic dna test a few years ago and i think the raw data says
Hi all, I found out i have a zinc deficiency. I have PA and also exocrine pancreatic insufficiency. I am also currently suffering from chronic sinusitis and tinitus. Do any of you have any experience of zinc deficiency? I had a commercial genetic dna test a few years ago and i think the raw data says
Luac
in
Pernicious Anaemia Society
3 years ago
New guy with old RLS
70 year-old Vietnam veteran… AND Jazz guitar player ;-) Tramadol times eight years, (hellish withdrawal x 14 mos), 12 years to present on hydrocodone 10 mg 4 x a day. My doctor is going to switch me to Suboxone because I’m going through opioid withdrawal 4 x a day. Besides refractory RLS, I have chronic
70 year-old Vietnam veteran… AND Jazz guitar player ;-) Tramadol times eight years, (hellish withdrawal x 14 mos), 12 years to present on hydrocodone 10 mg 4 x a day. My doctor is going to switch me to Suboxone because I’m going through opioid withdrawal 4 x a day. Besides refractory RLS, I have chronic
OudisCool
in
Restless Legs Syndrome
3 years ago
RLS-ROPINOLE
Thanks for all your help. i have been off ropinirole for 7 days. it has took me over 9 months to reduce dosage down. still not able to sleep for first 4 hrs at nite. getting 3 to 4 hrs of sleep at night. this miracle for me whith out taking any meds. i believe longer i go with out better i will get.i
Thanks for all your help. i have been off ropinirole for 7 days. it has took me over 9 months to reduce dosage down. still not able to sleep for first 4 hrs at nite. getting 3 to 4 hrs of sleep at night. this miracle for me whith out taking any meds. i believe longer i go with out better i will get.i
help3
in
Restless Legs Syndrome
3 years ago
Efficacy of methadone for refractory RLS
Fellow RLS sufferers, For a short bio, if you don't mind, you can skip to the second paragraph: I'm in my early 30s. Suffered mild RLS as long as I can remember I (didn't know it was RLS at the time). RLS increased in intensity and frequency during my 20s. It became a nightly thing around the time I
Fellow RLS sufferers, For a short bio, if you don't mind, you can skip to the second paragraph: I'm in my early 30s. Suffered mild RLS as long as I can remember I (didn't know it was RLS at the time). RLS increased in intensity and frequency during my 20s. It became a nightly thing around the time I
GuillaumeL
in
Restless Legs Syndrome
3 years ago
Devastating end to my pregnancy
I am heartbroken This last 3 weeks have been awful. We discovered at our 12 week scan that our baby had a large amount of fluid on the back of the neck, a clear indicator of a problem. We were supposed to have the CVS test to confirm what the issue with but that was not able to go ahead due to difficulties
I am heartbroken This last 3 weeks have been awful. We discovered at our 12 week scan that our baby had a large amount of fluid on the back of the neck, a clear indicator of a problem. We were supposed to have the CVS test to confirm what the issue with but that was not able to go ahead due to difficulties
Skittles11
in
Fertility Network UK
3 years ago
Restless legss
Edoxaban 60mg Bisoprolol 2.5mg Lercanidipine10mg Dr put me on these tablets for irregular heartbeat would they agree with restless legs only I've had terrible nights since I started them
Edoxaban 60mg Bisoprolol 2.5mg Lercanidipine10mg Dr put me on these tablets for irregular heartbeat would they agree with restless legs only I've had terrible nights since I started them
ALDK79ey
in
Restless Legs Syndrome
3 years ago
Opinions on Hemp creams.
Hello everyone, I've recently decided to purchase some compression gloves for my hands and this cream called Hemp Active cream by 5kind popped up on my screen. It has a lot of good reviews but they also have a stronger version. I'm posting this because I've used Voltarol in the past and it doesn't really
Hello everyone, I've recently decided to purchase some compression gloves for my hands and this cream called Hemp Active cream by 5kind popped up on my screen. It has a lot of good reviews but they also have a stronger version. I'm posting this because I've used Voltarol in the past and it doesn't really
Bunnzillah
in
LUPUS UK
3 years ago
Gabapentin and Ropinirole please .....
1. I came across an old post on here with someone saying that if you take Gabapentin with Ropinirole, then the Ropinirole does not cause augmentation. Am guessing this is not true, but I thought I would put it out there to see if anyone has anyone definitive research on this. 2. Also read that it
1. I came across an old post on here with someone saying that if you take Gabapentin with Ropinirole, then the Ropinirole does not cause augmentation. Am guessing this is not true, but I thought I would put it out there to see if anyone has anyone definitive research on this. 2. Also read that it
67Waterman
in
Restless Legs Syndrome
3 years ago
Question retinal / retinol topical and IVF
Hello I have an unusual question but during this whole IVF cycle I used topical retinol products no Tretinoin but retinol . I had my transfer today ? Should I stop the retinol ? Or should I stop when I am pregnant ? Could it have affected the quality of the eggs ? Thanks so much !
Hello I have an unusual question but during this whole IVF cycle I used topical retinol products no Tretinoin but retinol . I had my transfer today ? Should I stop the retinol ? Or should I stop when I am pregnant ? Could it have affected the quality of the eggs ? Thanks so much !
Yellowbellow1212
in
Fertility Network UK
3 years ago
Ellfindoe and LotteM please ....
Thank you to Ellfindoe for being patient and explaining so well. I hope you don’t mind, but I have taken what you have said and put it in my own words to try to ensure that I understand what you have said. Here goes ….. The latest model of RLS is that there is a series of factors which lead to RLS
Thank you to Ellfindoe for being patient and explaining so well. I hope you don’t mind, but I have taken what you have said and put it in my own words to try to ensure that I understand what you have said. Here goes ….. The latest model of RLS is that there is a series of factors which lead to RLS
67Waterman
in
Restless Legs Syndrome
3 years ago
getting off a low dose of pramipexole
I was on Permax and Mirapex at .05 mg for rls for about 20 years, before augmentation set in. I reduced the Mirapex slowly, then went off completely for 7 months. Experiencing depression and anxiety, and sleep interrupted by rls , I went back on 3 years ago and have stayed on .125 by taking a 14 day
I was on Permax and Mirapex at .05 mg for rls for about 20 years, before augmentation set in. I reduced the Mirapex slowly, then went off completely for 7 months. Experiencing depression and anxiety, and sleep interrupted by rls , I went back on 3 years ago and have stayed on .125 by taking a 14 day
Cather
in
Restless Legs Syndrome
3 years ago
Clarification needed please Ellfindoe, Joolsg and others
I still struggle with the fact that RLS absolutely responds to Ropinirole, which is a dopamine-receptor agonist, but then we are told no to that, and are advised to take Gabapentin, which is an anticonvulsant medication. Stupid question but is that telling me that lack of dopamine causes the nerves
I still struggle with the fact that RLS absolutely responds to Ropinirole, which is a dopamine-receptor agonist, but then we are told no to that, and are advised to take Gabapentin, which is an anticonvulsant medication. Stupid question but is that telling me that lack of dopamine causes the nerves
67Waterman
in
Restless Legs Syndrome
3 years ago
Question for Ellfindoe or Joolsg about Gabapentin please
I have written before, but a quick recap. I was on Ropinirole for around 17 years, starting off with 0.12mg nightly (when I have to confess I thought it was the most wonderful drug in the world as it completely stopped my RLS) to more recently when I have been taking 0.50mg and 0.25mg during the day
I have written before, but a quick recap. I was on Ropinirole for around 17 years, starting off with 0.12mg nightly (when I have to confess I thought it was the most wonderful drug in the world as it completely stopped my RLS) to more recently when I have been taking 0.50mg and 0.25mg during the day
67Waterman
in
Restless Legs Syndrome
3 years ago
Looking back
I am late 60's & have had RLS for as long as I can remember & started out on Pergolide as I was experiencing minor irritation in the autumn/winter months so treated them like I would for any headache - popped a pill when I needed it. Later I was told how great Ropinirole was, so switched & took it
I am late 60's & have had RLS for as long as I can remember & started out on Pergolide as I was experiencing minor irritation in the autumn/winter months so treated them like I would for any headache - popped a pill when I needed it. Later I was told how great Ropinirole was, so switched & took it
joepublic
in
Restless Legs Syndrome
3 years ago
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