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Williams syndrome
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QUALITY OF LIFESTATEMENT
Many times on this site I have mentioned the fact that I've completed what is known as 'A Quality of Life Statement'. I have been asked on several occasions to explain. Unfortunately I have misplaced the original document. And as it was 5 foolscap typed pages long, I was somewhat hesitant to replicate
Many times on this site I have mentioned the fact that I've completed what is known as 'A Quality of Life Statement'. I have been asked on several occasions to explain. Unfortunately I have misplaced the original document. And as it was 5 foolscap typed pages long, I was somewhat hesitant to replicate
TEAH35
in
Restless Legs Syndrome
5 years ago
Private Referral
Hi guys, So about a month ago my GP agreed with me that I needed to see a rheumatologist about the benign joint hypermobility syndrome diagnosis, to confirm whether or not for my own sanity if it was hypermobile EDS or hypermobility spectrum disorder. I don't know which resources I can send to my employer
Hi guys, So about a month ago my GP agreed with me that I needed to see a rheumatologist about the benign joint hypermobility syndrome diagnosis, to confirm whether or not for my own sanity if it was hypermobile EDS or hypermobility spectrum disorder. I don't know which resources I can send to my employer
emilyhedgehog
in
Ehlers-Danlos Support UK
5 years ago
Clonazepam
Been to see a neurologist after trying pregablin and gabapentin with no success..in fact both exaggerated the symptoms. He has prescribed clonazepam.. After a week there is still no change or sleep.. Any suggestions welcome
Been to see a neurologist after trying pregablin and gabapentin with no success..in fact both exaggerated the symptoms. He has prescribed clonazepam.. After a week there is still no change or sleep.. Any suggestions welcome
shebobs
in
Restless Legs Syndrome
5 years ago
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Joint Hypermobility Confusion
Hello! So I'll start off saying that I don't have EDS (at least not that I know of), so my apologies if this seems completely irrelevant. However, I have joint hypermobility, and with that comes pain in specific joints, muscle pain/tightness, and parts of my body frequently being "out of place" (i.e
Hello! So I'll start off saying that I don't have EDS (at least not that I know of), so my apologies if this seems completely irrelevant. However, I have joint hypermobility, and with that comes pain in specific joints, muscle pain/tightness, and parts of my body frequently being "out of place" (i.e
natsylvie
in
Ehlers-Danlos Support UK
5 years ago
Dr Buchfuhrer is Awesome!
After suffering for years with RLS that went into augmentation I found out about Dr Buchfuhrer and set up a visit. I’ve seen multiple neurologists, and GPS who did their best to help me. No one could help. In fact it only got worse because they increased requip and then The Neupro patch to levels that
After suffering for years with RLS that went into augmentation I found out about Dr Buchfuhrer and set up a visit. I’ve seen multiple neurologists, and GPS who did their best to help me. No one could help. In fact it only got worse because they increased requip and then The Neupro patch to levels that
Jrskyhook32
in
Restless Legs Syndrome
5 years ago
Controlling Lesion Pain
Regarding oral & genital lesions what have you found to be effective in minimizing lesions and controlling pain. I use steroids, Percocet, 2% viscous Lidocaine on the genital lesions and magic mouthwash orally. That’s 100 ml of the Lidocaine & 60-80 ml of antacid (maalox) and Diphenhydramine HCI (Benadryl
Regarding oral & genital lesions what have you found to be effective in minimizing lesions and controlling pain. I use steroids, Percocet, 2% viscous Lidocaine on the genital lesions and magic mouthwash orally. That’s 100 ml of the Lidocaine & 60-80 ml of antacid (maalox) and Diphenhydramine HCI (Benadryl
Number4
in
Behçet's UK
5 years ago
Very curious....
So, after 10 months on pred for PMR I have reduced from 24 to 12 mg. From the beginning, although greatly improved, I was never pain free, with some shoulder, hip, neck and thigh pain almost every day. Now, however, at 12mg, I feel much better, and am able to exercise at the gym and have very little
So, after 10 months on pred for PMR I have reduced from 24 to 12 mg. From the beginning, although greatly improved, I was never pain free, with some shoulder, hip, neck and thigh pain almost every day. Now, however, at 12mg, I feel much better, and am able to exercise at the gym and have very little
Manchild
in
PMRGCAuk
5 years ago
Update
Thought I'd update you all I had my baby boy on the 8th June at 12.11am he weighed 5lb14oz I was induced due to him measuring small it was a very traumatic experience something I'd never want to go through again made worse that baby had a poo so I was kept in longer after his birth now at 30 days old
Thought I'd update you all I had my baby boy on the 8th June at 12.11am he weighed 5lb14oz I was induced due to him measuring small it was a very traumatic experience something I'd never want to go through again made worse that baby had a poo so I was kept in longer after his birth now at 30 days old
Emilylouise-
in
Pregnancy and Parenting Support
5 years ago
Black tongue
Hi I have just been diagnose with pmr I am still not sure what it is and is it serious one thing I forgot to tell the doctor my dentist said I have a black tongue and I have a metal taste in my mouth is this normal with this condition
Hi I have just been diagnose with pmr I am still not sure what it is and is it serious one thing I forgot to tell the doctor my dentist said I have a black tongue and I have a metal taste in my mouth is this normal with this condition
Doubter
in
PMRGCAuk
5 years ago
Colofac versus Buscopan
I found Buscopan really helped my IBS (wind on left hand side and pain plus general feeling ill) but the GP said it had been associated with dementia so I stopped. I’m thinking of trying Colofac as peppermint capsules don’t seem to help. Anyone found Colofac helpful?
I found Buscopan really helped my IBS (wind on left hand side and pain plus general feeling ill) but the GP said it had been associated with dementia so I stopped. I’m thinking of trying Colofac as peppermint capsules don’t seem to help. Anyone found Colofac helpful?
Wifflesnook
in
IBS Network
5 years ago
Struggling and has anyone had a scratch before treatment?
Really struggling today. Tuesdays are always awful as it’s the day I lost my little girl. I’ve had the go ahead that my hyperplasia is not an issue so I can start IVF again. This time the consultant has suggest the short protocol (reckons I will get more good quality embryos) as the long only produced
Really struggling today. Tuesdays are always awful as it’s the day I lost my little girl. I’ve had the go ahead that my hyperplasia is not an issue so I can start IVF again. This time the consultant has suggest the short protocol (reckons I will get more good quality embryos) as the long only produced
Hopeandhell
in
Fertility Network UK
5 years ago
Desperate for sleep. Cannabis?
Ropinerole and Gabapentin haven't worked for me. My body has become tolerant of Codeine and Tramadol for the time being so I need to have a long holiday from them to reset my receptors. The torture of extreme sleep deprivation is driving me to consider illegal cannabis as an edible. If anyone on here
Ropinerole and Gabapentin haven't worked for me. My body has become tolerant of Codeine and Tramadol for the time being so I need to have a long holiday from them to reset my receptors. The torture of extreme sleep deprivation is driving me to consider illegal cannabis as an edible. If anyone on here
Jumpey
in
Restless Legs Syndrome
5 years ago
Help me plz linzess and Amitiza
Hello everyone I been having this problem all my life encoperisis and enuresis now I know its more ibs-c i just turn 28 I been trying to get this better but nothing is helping. My gi doctor gave me Linzess 290mg 1 a day but when I go to CvS to pick it up they want 1k for 90 pills yeah no sorry cant pay
Hello everyone I been having this problem all my life encoperisis and enuresis now I know its more ibs-c i just turn 28 I been trying to get this better but nothing is helping. My gi doctor gave me Linzess 290mg 1 a day but when I go to CvS to pick it up they want 1k for 90 pills yeah no sorry cant pay
craigers618
in
IBS Network
5 years ago
Progress but not supported enough at work
Hi, my first post after reading loads. I fractured my skull in 2014 and caused damage to my frontal lobe and have suffered ups and downs since but I have made a great recovery. I’m a curriculum leader in an fe college and from the point where I didn’t feel comfortable teaching children due to feeling
Hi, my first post after reading loads. I fractured my skull in 2014 and caused damage to my frontal lobe and have suffered ups and downs since but I have made a great recovery. I’m a curriculum leader in an fe college and from the point where I didn’t feel comfortable teaching children due to feeling
Davidwoods78
in
Headway
5 years ago
CatoG
Hello everyone, I am to this post. I have suffered with RLS for over 40 years. I have tried all the usual methods of dealing with it and am presently on ropinole. I take 6 mg a night (not knowing until recently what s high dose that is). I am experiencing abreaction and need to get off it. I have
Hello everyone, I am to this post. I have suffered with RLS for over 40 years. I have tried all the usual methods of dealing with it and am presently on ropinole. I take 6 mg a night (not knowing until recently what s high dose that is). I am experiencing abreaction and need to get off it. I have
CatoG
in
Restless Legs Syndrome
5 years ago
Additional IVF Techniques - HELP!
I had no idea there are so many optional add-ons for IVF! We are doing our second load of consent forms and they are asking us if we want: -Embryo Glue -Assisted Hatching -Endometrial Scratch -Embryoscope -PICSI Other than the scratch, this is the first I am hearing of any of these and it's really stressing
I had no idea there are so many optional add-ons for IVF! We are doing our second load of consent forms and they are asking us if we want: -Embryo Glue -Assisted Hatching -Endometrial Scratch -Embryoscope -PICSI Other than the scratch, this is the first I am hearing of any of these and it's really stressing
thepregnantpause
in
Fertility Network UK
5 years ago
Looking bad for one twin after IVF
Hi ladies I hope you are all ok and feeling strong. I am writing this in case anyone has gone through anything similar. After 3 rounds of IVF at 40 I finally became pregnant after a very good last round of IVF, ending in two transferred grade A and even some frosties (which we never had before). At
Hi ladies I hope you are all ok and feeling strong. I am writing this in case anyone has gone through anything similar. After 3 rounds of IVF at 40 I finally became pregnant after a very good last round of IVF, ending in two transferred grade A and even some frosties (which we never had before). At
CAS2
in
Fertility Network UK
5 years ago
Hit a brick wall!
I'm currently trying to get off Ropinirole and I've hit a brick wall! This last week has been a nightmare. Since getting down to .05mg of the drug my RLS has gone crazy. I've only had co cocamol to help with the pain, which hasn't helped my legs very much. I've had so little sleep and last night I
I'm currently trying to get off Ropinirole and I've hit a brick wall! This last week has been a nightmare. Since getting down to .05mg of the drug my RLS has gone crazy. I've only had co cocamol to help with the pain, which hasn't helped my legs very much. I've had so little sleep and last night I
Scattypatty
in
Restless Legs Syndrome
5 years ago
Ultrasound Scans - Results
Quite often posters ask whether they find out their Ultrasound Scan result from the technician performing the scan. I found this from the NHS website on Ultrasound scan procedures which may help... “You may be told the results of your scan soon after it's been carried out, but in most cases the
Quite often posters ask whether they find out their Ultrasound Scan result from the technician performing the scan. I found this from the NHS website on Ultrasound scan procedures which may help... “You may be told the results of your scan soon after it's been carried out, but in most cases the
Hidden
in
British Liver Trust
5 years ago
Looking for advice
My husband acquired a brain injury in 2001 from a RTA. I met him after his accident and we've been together for 10 years. We've managed his behaviour on our own and although we've had our ups and downs we've muddled through. This last year though his behaviour has deteriorated (memory, confusion, obsessive
My husband acquired a brain injury in 2001 from a RTA. I met him after his accident and we've been together for 10 years. We've managed his behaviour on our own and although we've had our ups and downs we've muddled through. This last year though his behaviour has deteriorated (memory, confusion, obsessive
Laylablue
in
Headway
5 years ago
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