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Lynch syndrome
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Prolia
Hi friends. I have been prescribed Prolia by a bone specialist and thought I would seek your opinions on the matter. Here's what's happening: I have had PMR for 2 years and am still on 16mg of prednisone. Right now I am using the DSNS method with a bit of an extension to reduce 1mg every 6 weeks or so
Hi friends. I have been prescribed Prolia by a bone specialist and thought I would seek your opinions on the matter. Here's what's happening: I have had PMR for 2 years and am still on 16mg of prednisone. Right now I am using the DSNS method with a bit of an extension to reduce 1mg every 6 weeks or so
BoaterAnnie
in
PMRGCAuk
4 years ago
PMR Seronegative Polyarthritis
PMR - Seronegative Arthritis - Gout attacks and three other "nasties". HAPPY FIRST OF ADVENT EVERYONE.💥❄️💐💃👵🏻 Don't think I'll send this one to my rheumatologist!!!
PMR - Seronegative Arthritis - Gout attacks and three other "nasties". HAPPY FIRST OF ADVENT EVERYONE.💥❄️💐💃👵🏻 Don't think I'll send this one to my rheumatologist!!!
Constance13
in
PMRGCAuk
4 years ago
Tomorrow
Well wish me luck as I'm seeing a neurologist or under study tomorrow again. Last time they told me to go on ropinerole but I refused as I'd weaned off prami. So I'm armed I've written my rls story which is sad reading and I've saved some of the links u provided onto my main screen on my phone and printed
Well wish me luck as I'm seeing a neurologist or under study tomorrow again. Last time they told me to go on ropinerole but I refused as I'd weaned off prami. So I'm armed I've written my rls story which is sad reading and I've saved some of the links u provided onto my main screen on my phone and printed
Netball-50
in
Restless Legs Syndrome
4 years ago
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Dry eyes and humidifiers
Hi Everyone I've had long standing dry eyes for many, many years (pre diagnosis of my Lupus and Relapsing Polychondritis) but in this past year the dryness has been especially awful. Alongside that I recently had a haemoraged blood vessel in one of my eyes which thankfully healed of its own accord. I've
Hi Everyone I've had long standing dry eyes for many, many years (pre diagnosis of my Lupus and Relapsing Polychondritis) but in this past year the dryness has been especially awful. Alongside that I recently had a haemoraged blood vessel in one of my eyes which thankfully healed of its own accord. I've
BookishVibes
in
LUPUS UK
4 years ago
Has anyone had pain in their leg(s)?
As my restless legs got worse, I started having pain in the front of my legs. I sleep on my stomach and the pain although mild keeps me from going back to sleep, although occasionally it is mild enough I can. I would also have it lying on my back. After awhile I started having the pain when I was up
As my restless legs got worse, I started having pain in the front of my legs. I sleep on my stomach and the pain although mild keeps me from going back to sleep, although occasionally it is mild enough I can. I would also have it lying on my back. After awhile I started having the pain when I was up
SueJohnson
in
Restless Legs Syndrome
4 years ago
Article from John-Hopkins regaurding the effects of opiates on RLS
No question, I just wanted to post some of an article regaurding the effects of opiates on RLS (the full text can be found on John Hopkins university website. Dr. Willis (as in Willis-Ekbomb disease / RLS) in his description of this disease in 1685 also reported on the benefits of opiates for treating
No question, I just wanted to post some of an article regaurding the effects of opiates on RLS (the full text can be found on John Hopkins university website. Dr. Willis (as in Willis-Ekbomb disease / RLS) in his description of this disease in 1685 also reported on the benefits of opiates for treating
Stdorn
in
Restless Legs Syndrome
4 years ago
Restless legs
Hi all! Restless legs are the bain of my life! Don't think I've had a good sleep for years.my doctor gave me Pramipexole a parkinson drug for the problem. I have fibromyalgia and fatty liver. Does anyone have pain in left side under the rib?
Hi all! Restless legs are the bain of my life! Don't think I've had a good sleep for years.my doctor gave me Pramipexole a parkinson drug for the problem. I have fibromyalgia and fatty liver. Does anyone have pain in left side under the rib?
Drhook
in
Restless Legs Syndrome
4 years ago
Fatty Liver Disease
I was diagnosed two years ago with Ehlers Danlos, and just learned I have NALD—I rarely drink and have a relatively good diet. I asked this question to my local support group and around 1/4 of 20 responded they have it. EDS can affect any systems in multiple ways because connective tissue is throughout
I was diagnosed two years ago with Ehlers Danlos, and just learned I have NALD—I rarely drink and have a relatively good diet. I asked this question to my local support group and around 1/4 of 20 responded they have it. EDS can affect any systems in multiple ways because connective tissue is throughout
Mahala1
in
Ehlers-Danlos Support UK
4 years ago
Mosaic embryo
Hi all, my PGS test came back - out of the two embryos I had to send off for testing, one was complex abnormal (meaning more than three abnormalities I believe?) and the other one was low level mosaic. The genetic counsellor told me this could mean the embryo corrects itself or I could miscarry or give
Hi all, my PGS test came back - out of the two embryos I had to send off for testing, one was complex abnormal (meaning more than three abnormalities I believe?) and the other one was low level mosaic. The genetic counsellor told me this could mean the embryo corrects itself or I could miscarry or give
Crabonks
in
Fertility Network UK
4 years ago
Might work for you too!
I've had five nights now without RLS. Quit taking Sertraline and with MDs' okay I'm taking .25 mg of Alprazolam each evening. I also started twice daily on 28 mg of Iron supplement and 500 mg of Magnesium. RLS Symptoms are just about totally gone...Just a slight twinge once in a while, easy to ignore
I've had five nights now without RLS. Quit taking Sertraline and with MDs' okay I'm taking .25 mg of Alprazolam each evening. I also started twice daily on 28 mg of Iron supplement and 500 mg of Magnesium. RLS Symptoms are just about totally gone...Just a slight twinge once in a while, easy to ignore
9642birss
in
Restless Legs Syndrome
4 years ago
In focus: hereditary ovarian cancer - introduction
You can find more information and resources on hereditary ovarian cancer, BRCA mutations and
Lynch
Syndrome
at https://ovarian.org.uk/ovarian-cancer/brca/ If you would like to share your experiences of genetic testing, please comment on this post.
You can find more information and resources on hereditary ovarian cancer, BRCA mutations and
Lynch
Syndrome
at https://ovarian.org.uk/ovarian-cancer/brca/ If you would like to share your experiences of genetic testing, please comment on this post.
OvacomeSupport
Administrator
in
My Ovacome
4 years ago
Can you do intense exercise with RLS?
Hi, I’m wondering if anyone in this forum has looked into the relationship between high levels of exercise (e.g. running, mountaineering and cycling) and the intensity of RLS, or has any experience they’d like to share? I have RLS which can vary from Mild to Severe (using the Restless Legs Syndrome Rating
Hi, I’m wondering if anyone in this forum has looked into the relationship between high levels of exercise (e.g. running, mountaineering and cycling) and the intensity of RLS, or has any experience they’d like to share? I have RLS which can vary from Mild to Severe (using the Restless Legs Syndrome Rating
Munroist
in
Restless Legs Syndrome
4 years ago
Ropinirole dependency
I've just been diagnosed with RLS and have been advised to start taking ropinirole. Will I then become dependent on it for the rest of my life? Can you ever stop taking ropinirole once you start?
I've just been diagnosed with RLS and have been advised to start taking ropinirole. Will I then become dependent on it for the rest of my life? Can you ever stop taking ropinirole once you start?
Hidden
in
Restless Legs Syndrome
4 years ago
Virtual support from Ovacome and Ovarian Cancer Action this week
BRCA and
Lynch
syndrome
: starting a family - Wednesday 2 September, 12.30-1.30pm https://www.ovacome.org.uk/Event/brca-and-
lynch
-
syndrome
-starting-a-family Younger Women's Group - Wednesday 2 September, 5-7pm https://www.ovacome.org.uk/Event/younger-womens-group-event Friday afternoon chat and Q&A -
BRCA and
Lynch
syndrome
: starting a family - Wednesday 2 September, 12.30-1.30pm https://www.ovacome.org.uk/Event/brca-and-
lynch
-
syndrome
-starting-a-family Younger Women's Group - Wednesday 2 September, 5-7pm https://www.ovacome.org.uk/Event/younger-womens-group-event Friday afternoon chat and Q&A -
OvacomeSupport
Administrator
in
My Ovacome
4 years ago
Day 3 transfer of 2 embryos IVF
Hi. I've been told I can do a day 3 transfer of 2 embryos. I'm worried about the risks and complications that come with twin pregnancy. What should I do? 1 embryo or 2?
Hi. I've been told I can do a day 3 transfer of 2 embryos. I'm worried about the risks and complications that come with twin pregnancy. What should I do? 1 embryo or 2?
EasterBunny7
in
Fertility Network UK
4 years ago
RLS
Hi everyone, I’ve been suffering for severe RSL for 5 years now, I have uncontrollable leg twitches, have been to the GP multiple times about it as it usually takes be 1-3 hours to get to sleep because of my leg feels like it’s getting electrocuted! I just don’t know what to do now, I’ve tried herbal
Hi everyone, I’ve been suffering for severe RSL for 5 years now, I have uncontrollable leg twitches, have been to the GP multiple times about it as it usually takes be 1-3 hours to get to sleep because of my leg feels like it’s getting electrocuted! I just don’t know what to do now, I’ve tried herbal
Tilzz
in
Restless Legs Syndrome
4 years ago
Beta hcg at 28 on 7.5DP5DT. Help ?
Hi everyone. My clinic likes to test for beta hcg 9DP5DT. Unfortunately my clinic is closed on 9 days past hence they ordered a blood test the previous day. My transfer was late evening so I was technically 7.5 days past my 5 day transfer at the time of drawing blood and my result was 28. I am retesting
Hi everyone. My clinic likes to test for beta hcg 9DP5DT. Unfortunately my clinic is closed on 9 days past hence they ordered a blood test the previous day. My transfer was late evening so I was technically 7.5 days past my 5 day transfer at the time of drawing blood and my result was 28. I am retesting
Pre92
in
Fertility Network UK
4 years ago
Advice on accessing NHS help after private diagnosis
Hi, I have just received my diagnosis of Hypermobile EDS with Marfanoid phenotype via a private consultation with Dr Mittal. I had previously been diagnosed by an NHS Rheumatologist with Joint Hypermobility 3 years ago but the Rheumy point blank refused to consider EDS as I "wasn't in a wheelchair",
Hi, I have just received my diagnosis of Hypermobile EDS with Marfanoid phenotype via a private consultation with Dr Mittal. I had previously been diagnosed by an NHS Rheumatologist with Joint Hypermobility 3 years ago but the Rheumy point blank refused to consider EDS as I "wasn't in a wheelchair",
m1ms
in
Ehlers-Danlos Support UK
4 years ago
Leg pain in thigh.
Dont know if anybody can help had to go to local hospital last night as had alot of leg pain. Dr said it could be to R.A. never heard this before but he said the tissue can come away from bone in thigh has anybody had this please. Dont know what yo do as in alot of pain with it. Thanks.
Dont know if anybody can help had to go to local hospital last night as had alot of leg pain. Dr said it could be to R.A. never heard this before but he said the tissue can come away from bone in thigh has anybody had this please. Dont know what yo do as in alot of pain with it. Thanks.
gillpalmer
in
NRAS
4 years ago
Average of 17mm follicles at time of trigger, success stories?? IVF
Hello, I have 13 follicles ranging between 13-20mm and am triggering tonight. Will the follicles continue to grow after triggering with Lupron and Novarel. Also~~ Are the follicles that are 13, 14, 15 and 16mm too small to produce mature eggs? Is there a chance of finding more eggs? Would love to
Hello, I have 13 follicles ranging between 13-20mm and am triggering tonight. Will the follicles continue to grow after triggering with Lupron and Novarel. Also~~ Are the follicles that are 13, 14, 15 and 16mm too small to produce mature eggs? Is there a chance of finding more eggs? Would love to
junglequeensheen
in
Fertility Network UK
4 years ago
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