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Mast cell activation syndrome (MCAS)
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I had Sjogren's antibodies and slightly positive SCL 70 two years ago. Other than photosensitivity and leg pain, I didn't have any other symptoms. In March of this year I got covid and suddenly my ANA went from 1:80 to 1: 640 and my SCL70 was now more than 8. I now have fatigue muscle aches, Raynauds
I had Sjogren's antibodies and slightly positive SCL 70 two years ago. Other than photosensitivity and leg pain, I didn't have any other symptoms. In March of this year I got covid and suddenly my ANA went from 1:80 to 1: 640 and my SCL70 was now more than 8. I now have fatigue muscle aches, Raynauds
Erniedoll
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Restless legs are worse from a foot massager
Why are my restless legs worse after using a foot massager? I got this massager to ease my restless legs. Instead, it’s worse.
Why are my restless legs worse after using a foot massager? I got this massager to ease my restless legs. Instead, it’s worse.
Madnaz
in
Restless Legs Syndrome
3 years ago
THE NIGHTMARES HAVE BEEN THE WORST eek eek
I finished my withdrawal from Ropinirole the last week in Feb. 2020 . In March I felt pretty well until the nightmares started . They were horrific . I was afraid to be alone in broad daylight and going to bed was hellish.. At the time I was taking suboxone and gabapentin for RLS and having trouble
I finished my withdrawal from Ropinirole the last week in Feb. 2020 . In March I felt pretty well until the nightmares started . They were horrific . I was afraid to be alone in broad daylight and going to bed was hellish.. At the time I was taking suboxone and gabapentin for RLS and having trouble
sweetiepye
in
Restless Legs Syndrome
3 years ago
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Pregabalin and ropinirole
Would like to know if anyone has any advice for me.....been on 2mg ropinirole along with 300mg pregabalin for about 2 years. I was able to see Dr Winkleman at Mass General 2 years ago when I was on 6 mg. of ropinirole . Never totally got off of it . I also experienced augmentation when on the 6mg....
Would like to know if anyone has any advice for me.....been on 2mg ropinirole along with 300mg pregabalin for about 2 years. I was able to see Dr Winkleman at Mass General 2 years ago when I was on 6 mg. of ropinirole . Never totally got off of it . I also experienced augmentation when on the 6mg....
tweedy66
in
Restless Legs Syndrome
3 years ago
Help for after Meningitis
Hello friends! I wish all of you a healthy 2021! My name is Fredy, I was born in Peru, but for problems in my country I moved to the USA, now I live in New York. In 2012 I got meningitis, 2 weeks in comma, when I woke up from coma, my brain was gone, after that took me like 4 years to understand something
Hello friends! I wish all of you a healthy 2021! My name is Fredy, I was born in Peru, but for problems in my country I moved to the USA, now I live in New York. In 2012 I got meningitis, 2 weeks in comma, when I woke up from coma, my brain was gone, after that took me like 4 years to understand something
menin
in
Meningitis Now
3 years ago
Update on weighted blanket and Trazodone
Hi all!! I still like my weighted blanket but actually it's not as good as I thought at the beginning. A few days after I began using it, my legs started to bother me again although not as bad as before.😪 I was hoping the problem would disappear as long as I used the blanket. Oh well..😯 At that time
Hi all!! I still like my weighted blanket but actually it's not as good as I thought at the beginning. A few days after I began using it, my legs started to bother me again although not as bad as before.😪 I was hoping the problem would disappear as long as I used the blanket. Oh well..😯 At that time
Micafe
in
Restless Legs Syndrome
3 years ago
Leaving Ropinirole for Buprenorphine - Do I needed to ease off R first?
Hello, Quick question. If I am able to have my doctor prescribe Buprenorphine will I need to slowly come off Ropinirole while taking Buprenorphine or can I just stop Ropinirole? I see the doctor first week of January and think I could start reducing Ropinirole now but would rather not do it over the
Hello, Quick question. If I am able to have my doctor prescribe Buprenorphine will I need to slowly come off Ropinirole while taking Buprenorphine or can I just stop Ropinirole? I see the doctor first week of January and think I could start reducing Ropinirole now but would rather not do it over the
B534967
in
Restless Legs Syndrome
3 years ago
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
3 years ago
Insurance companies rejecting Fulvestrant Injection
Hi, My mom has metstatic breast cancer and she has been advised fulvestrant injection but the claim has been getting rejected by tpa saying that is not included in the administrative 24 hours clause. Did anyone was able to get around this stuff in India and got their claim accepted. What documents were
Hi, My mom has metstatic breast cancer and she has been advised fulvestrant injection but the claim has been getting rejected by tpa saying that is not included in the administrative 24 hours clause. Did anyone was able to get around this stuff in India and got their claim accepted. What documents were
king_singh72
in
Breast Cancer India
3 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
3 years ago
Stem Cell Transplantation at Mass General
I have posted about this particular stem cell transplantation at least twice before. I understand that it was a "pay for play" situation. I understand that it is an "N of 1" situation. I understand that "placebo effect" could be a factor. I understand that much broader studies may be necessary. With
I have posted about this particular stem cell transplantation at least twice before. I understand that it was a "pay for play" situation. I understand that it is an "N of 1" situation. I understand that "placebo effect" could be a factor. I understand that much broader studies may be necessary. With
jimcaster
in
Cure Parkinson's
3 years ago
Tocilizumab patients and the COVID Vaccine
My Rheumatologist has let me know that it is fine for me to have the COVID Vaccine and to continue having my Tocilizumab injections. I am also on 10 mgs of Prednisalone. I have Giant Cell Arteritis/Large Vessel Vasculitis.
My Rheumatologist has let me know that it is fine for me to have the COVID Vaccine and to continue having my Tocilizumab injections. I am also on 10 mgs of Prednisalone. I have Giant Cell Arteritis/Large Vessel Vasculitis.
SheffieldJane
in
PMRGCAuk
3 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
3 years ago
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
3 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
3 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
3 years ago
Would love some advice
Hi. Firstly, I just want to say how grateful I am to have found this forum. It is invaluable and has answered some of my questions before I have even asked them - ie. blurry eyes etc. I would love some advice though if you can still put up with me. My consultant reduced my 40mg dose of prednisolone
Hi. Firstly, I just want to say how grateful I am to have found this forum. It is invaluable and has answered some of my questions before I have even asked them - ie. blurry eyes etc. I would love some advice though if you can still put up with me. My consultant reduced my 40mg dose of prednisolone
Sophiestree
in
PMRGCAuk
3 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
3 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
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
3 years ago
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