Search
Search
About
Log in
Join
Experiences with
Cockayne syndrome
Posts
Communities
3,251 public posts
Filter results
Try try then drop trying
Right everyone the emails we all share seem to head in the same direction we just don't know so for us all I have scoured the entire universe to see what can be done for six years I have been totally dependendent on wheel chairs etc untill recently look i have been trying two new meds on secret trail
Right everyone the emails we all share seem to head in the same direction we just don't know so for us all I have scoured the entire universe to see what can be done for six years I have been totally dependendent on wheel chairs etc untill recently look i have been trying two new meds on secret trail
Mat08
in
Functional Neurological Disorder - FND Hope
6 years ago
Hypermobility or more?
Hey, just to give a round up I'm 21 and I've suffered from joint and muscle pain, stiffness and locking etc pretty much since I can remember but I was only recently formally diagnosed with having Hypermobility Syndrome. The rheumatologist I saw spoke to me about genetic testing and I'm wondering if it's
Hey, just to give a round up I'm 21 and I've suffered from joint and muscle pain, stiffness and locking etc pretty much since I can remember but I was only recently formally diagnosed with having Hypermobility Syndrome. The rheumatologist I saw spoke to me about genetic testing and I'm wondering if it's
PixiePie97
in
Ehlers-Danlos Support UK
6 years ago
Diagnosis override and lack of awareness in NHS of EDS
I was diagnosed with hypermobility syndrome in 2014. I had an op on my knee in 2007. Broke my leg in 2010. Physio only look at my knee. Anyway I was doagnosed with fibro in May by another rheumatologist. The app went ok. When the letter came she dropped my diagnosis of hypermobility syndrome and
I was diagnosed with hypermobility syndrome in 2014. I had an op on my knee in 2007. Broke my leg in 2010. Physio only look at my knee. Anyway I was doagnosed with fibro in May by another rheumatologist. The app went ok. When the letter came she dropped my diagnosis of hypermobility syndrome and
angie610
in
Ehlers-Danlos Support UK
6 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Amnio pain
I had my amniocentesis on monday its now friday and i am still cramping and sore, should i call triage ? Baby is still moving not as much but still there 24 weeks
I had my amniocentesis on monday its now friday and i am still cramping and sore, should i call triage ? Baby is still moving not as much but still there 24 weeks
Ceden273
in
Pregnancy and Parenting Support
6 years ago
Oh dear, more kit
So, I saw a bargain on the Adidas website and bagged myself a really lightweight running jacket ready for when the heatwave ends and normal British summer resumes. It’s mainly white with a bit of grey and some reflective bits, so should be good in the dark. It arrived earlier in the week. And then
So, I saw a bargain on the Adidas website and bagged myself a really lightweight running jacket ready for when the heatwave ends and normal British summer resumes. It’s mainly white with a bit of grey and some reflective bits, so should be good in the dark. It arrived earlier in the week. And then
Jay66UK
Graduate
in
Couch to 5K
6 years ago
Restless leg
I am currently taking Gabapenten and Amytriptolin for my restless leg. Medical Marijuana is illegal in my state. I started taking Hemp Cannibus Oil (30mg every morning) and taking a few hits on a bong every evening. I have cut down to 2, 500mg of Gabapentin a day instead of the 3 pills. I gave run out
I am currently taking Gabapenten and Amytriptolin for my restless leg. Medical Marijuana is illegal in my state. I started taking Hemp Cannibus Oil (30mg every morning) and taking a few hits on a bong every evening. I have cut down to 2, 500mg of Gabapentin a day instead of the 3 pills. I gave run out
Chileman
in
Restless Legs Syndrome
6 years ago
Rls
Was informed by my doctor yesterday that taking ropinirol well pregnant is a big no no I ad a miscarriage in March and it was from taking this medication doctors didn't tell me about this and I've now stopped it from yesterday and started taking magnesium vitamins +b6 as I've been told this helps guna
Was informed by my doctor yesterday that taking ropinirol well pregnant is a big no no I ad a miscarriage in March and it was from taking this medication doctors didn't tell me about this and I've now stopped it from yesterday and started taking magnesium vitamins +b6 as I've been told this helps guna
Melanie1978
in
Restless Legs Syndrome
6 years ago
And now for the good news
From the research section of the RLS Foundation. The lovely Doctor Ondo is working for us. 'The RLS Foundation has awarded a $37,000 grant to Dr William G. Ondo of Houston Methodist Neurological Institute to study a new medicine to treat RLS patients who have augmentation. "Augmentation is a condition
From the research section of the RLS Foundation. The lovely Doctor Ondo is working for us. 'The RLS Foundation has awarded a $37,000 grant to Dr William G. Ondo of Houston Methodist Neurological Institute to study a new medicine to treat RLS patients who have augmentation. "Augmentation is a condition
Parminter
in
Restless Legs Syndrome
6 years ago
Sharing MNC protocols
Hello, I am currently going through several MNC cycles which protocol is the following: +- from day 8 to day 11 75 u Menopur + orgalutran HCG: 5000 u Pregnyl It does not seems to work for me so I would like to try something else and my consultant told me that we could consider and try other protocols
Hello, I am currently going through several MNC cycles which protocol is the following: +- from day 8 to day 11 75 u Menopur + orgalutran HCG: 5000 u Pregnyl It does not seems to work for me so I would like to try something else and my consultant told me that we could consider and try other protocols
Clementinedam
in
Fertility Network UK
6 years ago
Finally off meds and regretting it.
So after many years on Clonazepan I'm finally off all chemicals after moving to Diazepan and now I'm regretting it. I was so fed up with how they made me feel and to be honest I'd forgotten how bad my symptoms are. So after a 24 week weaning process I'm off the meds and have been experimenting with natural
So after many years on Clonazepan I'm finally off all chemicals after moving to Diazepan and now I'm regretting it. I was so fed up with how they made me feel and to be honest I'd forgotten how bad my symptoms are. So after a 24 week weaning process I'm off the meds and have been experimenting with natural
Paul007
in
Restless Legs Syndrome
6 years ago
Scan confusion....
Hey ladies, So many questions today!! Originally my GP said I was going to have a 6 week scan after my BFP.... But as it is a natural pregnancy, high HCG and no medical conditions earliest I could get is an 8 week scan....does this mean then that this will include all the tests for downs etc? I am so
Hey ladies, So many questions today!! Originally my GP said I was going to have a 6 week scan after my BFP.... But as it is a natural pregnancy, high HCG and no medical conditions earliest I could get is an 8 week scan....does this mean then that this will include all the tests for downs etc? I am so
Hidden
in
Fertility Network UK
6 years ago
Update from Mattcass.
Hi There, Sorry for not being in touch the latest update is very good my transplant is a success the new lungs are great it.s like being born again, i had only one issue after my operation i never had the strength to bring up the Flem in my new lungs and I collapsed 4 days later they put me into a induced
Hi There, Sorry for not being in touch the latest update is very good my transplant is a success the new lungs are great it.s like being born again, i had only one issue after my operation i never had the strength to bring up the Flem in my new lungs and I collapsed 4 days later they put me into a induced
mattcass
in
NRAS
6 years ago
Low Dose Naltrexone
Well, of course, I had to google it, to find out what on earth was going on here. www.ldnscience.org/resources/interviews/interview-mark-shukhman This leads you to just one of the many interviews on this strange cure-all. This particular interview is of interest because it addresses ICDs, which may help
Well, of course, I had to google it, to find out what on earth was going on here. www.ldnscience.org/resources/interviews/interview-mark-shukhman This leads you to just one of the many interviews on this strange cure-all. This particular interview is of interest because it addresses ICDs, which may help
Parminter
in
Restless Legs Syndrome
6 years ago
When to take pregabalin (Lyrica)
Just picked up my prescription for Lyrica today. I'm about to switch over to it, as an alternative to gabapentin (which I've been taking for 2-3 years), partly because Dr. B feels it is better absorbed. I also am on the 2 mg Neupro patch. A few questions about Lyrica: - What time(s) of day do you take
Just picked up my prescription for Lyrica today. I'm about to switch over to it, as an alternative to gabapentin (which I've been taking for 2-3 years), partly because Dr. B feels it is better absorbed. I also am on the 2 mg Neupro patch. A few questions about Lyrica: - What time(s) of day do you take
rls_optimist
in
Restless Legs Syndrome
6 years ago
Lyrica and neupro patch together.
Has anybody tried both lyrica and the patch with a good result?I saw my neuro today and she recommended it together with lipoic acid and ferrum. I stopped pram because of augmentation.It has been 4 months now that i am on lyrica but it doesnt help much.Some combo of meds that i had found offering me
Has anybody tried both lyrica and the patch with a good result?I saw my neuro today and she recommended it together with lipoic acid and ferrum. I stopped pram because of augmentation.It has been 4 months now that i am on lyrica but it doesnt help much.Some combo of meds that i had found offering me
Katerina22
in
Restless Legs Syndrome
6 years ago
7 to 10 bowel movements per day. But still constipated
Is there any way I can stop having this amount of bowel movements per day. Been to see the doctor, she said that there was nothing she could give me for my frequent bowel movements and prescribed me with some Colofac (Mebeverine). And some Biocare probiotics 30 billion.
Is there any way I can stop having this amount of bowel movements per day. Been to see the doctor, she said that there was nothing she could give me for my frequent bowel movements and prescribed me with some Colofac (Mebeverine). And some Biocare probiotics 30 billion.
IBSsufferer_26
in
IBS Network
6 years ago
Agony 😓
Legs have been in pain for weeks now and cant even sleep let alone walk. I was on pramipexole years ago but my Dr stopped them over year ago cant remember why. Can someone please tell me is there better medication? Im also on iron tablets as iron low
Legs have been in pain for weeks now and cant even sleep let alone walk. I was on pramipexole years ago but my Dr stopped them over year ago cant remember why. Can someone please tell me is there better medication? Im also on iron tablets as iron low
Annimay43
in
Restless Legs Syndrome
6 years ago
Semen analysis translator plz?
Anyone speak sperm analysis lingo? GP said results “normal” ... that tells us nothing I said. Requested report. We shall take this with us to IVF referral but would love to know what any of this means? Errmm the word abnormal with 95% next to it isn’t exactly giving me “normal” vibes?!
Anyone speak sperm analysis lingo? GP said results “normal” ... that tells us nothing I said. Requested report. We shall take this with us to IVF referral but would love to know what any of this means? Errmm the word abnormal with 95% next to it isn’t exactly giving me “normal” vibes?!
Emmyeve
in
Fertility Network UK
6 years ago
5 wks out of 2wk induced coma, possible anoxia during open heart & fighting histoplasmosis. Minimally conscious. Not enough for drs?
Russ is now nodding yes, giving kisses EVERY time asked and even makes the smacking noise if kisses your cheek, hes starting to initiate kisses, he smiles a lot and consistently when appropriate, he will lift his head for a pillow or help roll when nurses ask him to when time to reposition. He is tracking
Russ is now nodding yes, giving kisses EVERY time asked and even makes the smacking noise if kisses your cheek, hes starting to initiate kisses, he smiles a lot and consistently when appropriate, he will lift his head for a pillow or help roll when nurses ask him to when time to reposition. He is tracking
Angelia1234
in
Headway
6 years ago
give it a try
I am fairly new to this post and I find it heartbreaking to read these letters. I understand what it is like to suffer from this horrible disorder. I had 8-9 years of utter misery. One of the many, many drugs I had which actually helped was Neupro, which was the 3rd dopamine I had tried. I was on
I am fairly new to this post and I find it heartbreaking to read these letters. I understand what it is like to suffer from this horrible disorder. I had 8-9 years of utter misery. One of the many, many drugs I had which actually helped was Neupro, which was the 3rd dopamine I had tried. I was on
darena
in
Restless Legs Syndrome
6 years ago
1
...
95
96
97
...
100
Next page
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
Restless Legs Syndrome
1418 results
Fertility Network UK
359 results
PMRGCAuk
132 results
View top 10 communities
Sort by
Most Relevant
Newest