Search
Search
About
Log in
Join
Experiences with
Sjogren-Larsson syndrome
Posts
Communities
3,295 public posts
Filter results
Neurology update
Good morning all. Yesterday I saw a very nice neurologist who gave me a full neurological exam (including sticking pins into me) . His conclusion was that a) I'm not a witch, and, b) I have no discernable neurological problems. He was somewhat surprised to hear that the rheum had diagnosed fibromyalgia
Good morning all. Yesterday I saw a very nice neurologist who gave me a full neurological exam (including sticking pins into me) . His conclusion was that a) I'm not a witch, and, b) I have no discernable neurological problems. He was somewhat surprised to hear that the rheum had diagnosed fibromyalgia
Linda3009
in
PMRGCAuk
5 years ago
Detective Work
After having repeated exacerbations, my consultant has discovered from sputem sampleas that I am suffering from "entrerobacter" and "pseudomonas". She has prescribed Ciproflaxin for the latter and in the meantime is arranging for me to have nebulised Gentamycin, the other drug Tazocin can only be administered
After having repeated exacerbations, my consultant has discovered from sputem sampleas that I am suffering from "entrerobacter" and "pseudomonas". She has prescribed Ciproflaxin for the latter and in the meantime is arranging for me to have nebulised Gentamycin, the other drug Tazocin can only be administered
Bobfirmin
in
Lung Conditions Community Forum
5 years ago
RLS
Hi .. this site is the best, thank you My question is: I am now completely off sifrol, having weened down from 0.75, withdrawal was horrendous 🥴 I am now taking tramadol to help with this how long before sifrol is completely out of your body? I want to get down to baseline to see if I can do without
Hi .. this site is the best, thank you My question is: I am now completely off sifrol, having weened down from 0.75, withdrawal was horrendous 🥴 I am now taking tramadol to help with this how long before sifrol is completely out of your body? I want to get down to baseline to see if I can do without
Ladro
in
Restless Legs Syndrome
5 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
More help please
I have posted here several times and have had wonderful help. Now I need more please. I have been trying to get back to more sleep , having gone through hell getting off the dopamine agonists. It is over 3 months since I began withdrawal, which took 6 weeks to be totally clear. Currently I am on Gabapentin
I have posted here several times and have had wonderful help. Now I need more please. I have been trying to get back to more sleep , having gone through hell getting off the dopamine agonists. It is over 3 months since I began withdrawal, which took 6 weeks to be totally clear. Currently I am on Gabapentin
wairoa36
in
Restless Legs Syndrome
5 years ago
Desperate for sleep.
I have taken pramipexole for a few years and life was wonderful then over a year ago the restless legs started again with a vengeance I was only taking one at night after being on the maximum for a while even on one at night it was working for a long time now here I am at 2-30am sitting up going mad
I have taken pramipexole for a few years and life was wonderful then over a year ago the restless legs started again with a vengeance I was only taking one at night after being on the maximum for a while even on one at night it was working for a long time now here I am at 2-30am sitting up going mad
Nevermind61
in
Restless Legs Syndrome
5 years ago
Felcainide vs. Tikosyn
I've been on flecainide since my ablation in July, 2017. I still continue to have episodes of afib and aflutter which can last a few minutes to a few days. My cardiologist would like me to switch to tikosyn but is leaving the decision up to my EP. I'll be seeing my EP soon and would like to discuss
I've been on flecainide since my ablation in July, 2017. I still continue to have episodes of afib and aflutter which can last a few minutes to a few days. My cardiologist would like me to switch to tikosyn but is leaving the decision up to my EP. I'll be seeing my EP soon and would like to discuss
JudyMarieC
in
Atrial Fibrillation Support
5 years ago
Small sores that will not go!
Just want some advice please. It’s my third month on Ibrutinib and all going really well. However, I have a few small sores on my hands, one on my nose and one on a buttock that just will not heal up. Saw a GP on Friday, never met anyone so bored by what I was saying 😠and he prescribed Fusidic Acid
Just want some advice please. It’s my third month on Ibrutinib and all going really well. However, I have a few small sores on my hands, one on my nose and one on a buttock that just will not heal up. Saw a GP on Friday, never met anyone so bored by what I was saying 😠and he prescribed Fusidic Acid
Jooby59
in
CLL Support
5 years ago
Do you need expert fertility information and face-face support from others trying to conceive?
Join the fertility group meeting in Swansea TONIGHT.. Thursday 7th November A senior Consultant and specialist in Male and Female infertility will be discussing all aspects of Reproductive Medicine/ IVF Services. As well as expert knowledge and practice in Fertility and Assisted conception techniques
Join the fertility group meeting in Swansea TONIGHT.. Thursday 7th November A senior Consultant and specialist in Male and Female infertility will be discussing all aspects of Reproductive Medicine/ IVF Services. As well as expert knowledge and practice in Fertility and Assisted conception techniques
AliceMatthews
Fertility Network UK
in
Fertility Network UK
5 years ago
update on my Homeopathic remedy treatment
I was diagnosed with PMR in March this year (2019), took Prednison ( 20mg) until August, tried to taper down slowly, but had to start over because of flair ups. Had an appointment -- consultation with a Homeopathic Doctor for 3 sessions and intensive interview. Took one pellet of Causticum, which was
I was diagnosed with PMR in March this year (2019), took Prednison ( 20mg) until August, tried to taper down slowly, but had to start over because of flair ups. Had an appointment -- consultation with a Homeopathic Doctor for 3 sessions and intensive interview. Took one pellet of Causticum, which was
km5yx7
in
PMRGCAuk
5 years ago
Does Neupogen wash help thin lining?
Hi, I was hoping someone could help me. I am doing my 7th cycle of ivf. I had 3 at argc and they all failed. I then moved on to donor eggs in Spain. Two of the cycles were cancelled as the lining did not get past 7mn. On the third where the lining was 7.3 there were no embryos to implant as we were doing
Hi, I was hoping someone could help me. I am doing my 7th cycle of ivf. I had 3 at argc and they all failed. I then moved on to donor eggs in Spain. Two of the cycles were cancelled as the lining did not get past 7mn. On the third where the lining was 7.3 there were no embryos to implant as we were doing
Bagpuss07
in
Fertility Network UK
5 years ago
Need face-face expert information & support?
Join the fertility group meeting on Thursday 7th November A senior Consultant and specialist in Male and Female infertility will be discussing all aspects of Reproductive Medicine/ IVF Services. As well as expert knowledge and practice in Fertility and Assisted conception techniques, Mrs Gordon has
Join the fertility group meeting on Thursday 7th November A senior Consultant and specialist in Male and Female infertility will be discussing all aspects of Reproductive Medicine/ IVF Services. As well as expert knowledge and practice in Fertility and Assisted conception techniques, Mrs Gordon has
AliceMatthews
Fertility Network UK
in
Fertility Network UK
5 years ago
Itchy rash more
Folliculitis continues - wash fom Doctor doesn’t clear aloe vera savlon hydrocortisone Aveeno don’t work - using ice packs at night and will try oatmeal bath tonight - any ideas please?
Folliculitis continues - wash fom Doctor doesn’t clear aloe vera savlon hydrocortisone Aveeno don’t work - using ice packs at night and will try oatmeal bath tonight - any ideas please?
Daffodilia
in
PMRGCAuk
5 years ago
Do you need expert fertility information and face-face support from others trying to conceive?
Join the fertility group meeting on Thursday 7th November in Swansea. A senior Consultant and specialist in Male and Female infertility will be discussing all aspects of Reproductive Medicine/ IVF Services. As well as expert knowledge and practice in Fertility and Assisted conception techniques, Mrs
Join the fertility group meeting on Thursday 7th November in Swansea. A senior Consultant and specialist in Male and Female infertility will be discussing all aspects of Reproductive Medicine/ IVF Services. As well as expert knowledge and practice in Fertility and Assisted conception techniques, Mrs
AliceMatthews
Fertility Network UK
in
Fertility Network UK
5 years ago
Methadone
Hi Everyone. Has anyone living in the U.K. with severe restless legs been prescribed methadone.? If so what are the results.? I ask because I've been on Tramadol for about 2 years (4x 20mg at night ) and they seem to be losing their efficacy now. Any other advice gratefully received.
Hi Everyone. Has anyone living in the U.K. with severe restless legs been prescribed methadone.? If so what are the results.? I ask because I've been on Tramadol for about 2 years (4x 20mg at night ) and they seem to be losing their efficacy now. Any other advice gratefully received.
bedith6
in
Restless Legs Syndrome
5 years ago
Magnesium deficiency, PPIs & RLS - shock revelation!
I only found out today, quite by accident, that PPI's can, and do, cause magnesium deficiency. Magnesium deficiency, in turn, can then cause cramps, muscle twitches and RLS. Holy hell! I've been taking PPIs for years - literally years - and despite mentioning that I have RLS to several doctors, not ONE
I only found out today, quite by accident, that PPI's can, and do, cause magnesium deficiency. Magnesium deficiency, in turn, can then cause cramps, muscle twitches and RLS. Holy hell! I've been taking PPIs for years - literally years - and despite mentioning that I have RLS to several doctors, not ONE
Chancery
in
Restless Legs Syndrome
5 years ago
I'm New - Boyfriend has EDS
Hello all! I do not know much about EDS other than what I've read online or what my boyfriend has told me about it. His EDS has always concerned me and it makes me sad because he believes his life expectancy is super short because some doctor told him this... It bothers me because not enough doctors
Hello all! I do not know much about EDS other than what I've read online or what my boyfriend has told me about it. His EDS has always concerned me and it makes me sad because he believes his life expectancy is super short because some doctor told him this... It bothers me because not enough doctors
Usako
in
Ehlers-Danlos Support UK
5 years ago
Started Buprenorphine 😴
Hello from NYC So far it has been really worth the long hall flight I have seen an amazing doctor in NYC I am seeing him again on Tuesday - I will seek his permission before popping his name up. He was lovely older man , hugged me when I left gave me his personal Mobile / cell number He reached
Hello from NYC So far it has been really worth the long hall flight I have seen an amazing doctor in NYC I am seeing him again on Tuesday - I will seek his permission before popping his name up. He was lovely older man , hugged me when I left gave me his personal Mobile / cell number He reached
Shumbah
in
Restless Legs Syndrome
5 years ago
Mary from the UK describes her combination of problems including Sjögren’s Syndrome, Non-Hodgkins Lymphoma, Lupus, and Mixed Connective Tiss
Mary from the UK describes her combination of problems including Sjögren’s Syndrome, Non-Hodgkins Lymphoma, Lupus, and Mixed Connective Tissue Disease. She suffered over two years before being prescribed LDN (Low Dose Naltrexone). Her quality of life went from a 2 to 9.5 out of 10. Her latest scans
Mary from the UK describes her combination of problems including Sjögren’s Syndrome, Non-Hodgkins Lymphoma, Lupus, and Mixed Connective Tissue Disease. She suffered over two years before being prescribed LDN (Low Dose Naltrexone). Her quality of life went from a 2 to 9.5 out of 10. Her latest scans
liveurlife
Volunteer
in
LDN Research Trust
5 years ago
Rls
Hi everyone I’ve been suffering with restless legs for many years it is a bad disease I just hope I can find something natural that really works for me KRATOM seems to be working pretty well Requip is something That works but put you to sleep I can’t watch a movie without twitching my legs it’s just
Hi everyone I’ve been suffering with restless legs for many years it is a bad disease I just hope I can find something natural that really works for me KRATOM seems to be working pretty well Requip is something That works but put you to sleep I can’t watch a movie without twitching my legs it’s just
Applejacks95
in
Restless Legs Syndrome
5 years ago
Big thank you
I can't remember who to thank (Madlegs, maybe?) I've taken gabapentin for close to 30 years for unrelated nerve pain. About 5 years ago I was hospitalized and in the course of things, told that I had a magnesium deficiency and to supplement. So I have been taking magnesium. No one ever even mentioned
I can't remember who to thank (Madlegs, maybe?) I've taken gabapentin for close to 30 years for unrelated nerve pain. About 5 years ago I was hospitalized and in the course of things, told that I had a magnesium deficiency and to supplement. So I have been taking magnesium. No one ever even mentioned
Whippetmama
in
Restless Legs Syndrome
5 years ago
1
...
71
72
73
...
100
Next page
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
Restless Legs Syndrome
1452 results
Fertility Network UK
360 results
PMRGCAuk
135 results
View top 10 communities
Sort by
Most Relevant
Newest