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Cogan's syndrome
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Where to get help on diagnosing EDs.
Hi, Where can I go to get genetic testing done for Ehlers Danlos. I live in East Sussex in the UK. I am in my 50s but my 2 adult daughters have so many symptoms of EDs and one in particular is suffering severely with pain. Her g.p. has no interest and just tells her its in her head. She did see a Dr
Hi, Where can I go to get genetic testing done for Ehlers Danlos. I live in East Sussex in the UK. I am in my 50s but my 2 adult daughters have so many symptoms of EDs and one in particular is suffering severely with pain. Her g.p. has no interest and just tells her its in her head. She did see a Dr
honeybea22
in
Ehlers-Danlos Support UK
5 years ago
Toothache
Hi I’m currently on 3 mg prednisolone for Gca and have got toothache. Can’t get appt for a few days. Tried paracetamol but need something stronger. Can I take nurofen express? Also on Accrete D3 and Omprazole. Advice would be appreciated.
Hi I’m currently on 3 mg prednisolone for Gca and have got toothache. Can’t get appt for a few days. Tried paracetamol but need something stronger. Can I take nurofen express? Also on Accrete D3 and Omprazole. Advice would be appreciated.
Susanmod
in
PMRGCAuk
6 years ago
Found My Cure for RLS and Severe Night Cramps
Had a pre-op blood panel taken before having my pacemaker replaced. It showed potassium and magnesium deficiencies. Changed my diuretic to a potassium preserving type, increased my intake of potassium and magnesium rich foods, started taking magnesium glycinate supplements (not the kind that act as
Had a pre-op blood panel taken before having my pacemaker replaced. It showed potassium and magnesium deficiencies. Changed my diuretic to a potassium preserving type, increased my intake of potassium and magnesium rich foods, started taking magnesium glycinate supplements (not the kind that act as
mam6818
in
Restless Legs Syndrome
5 years ago
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What is it with inflammatory arthritis or grumble, grumble.
Went to catch a train to town this afternoon. No hurrying or anything. As I walked round to the station I noticed that my lower legs were starting to hurt. Not on my shins but to the sides of them a crampy kind of feeling - both legs, definitely didn’t feel good. By the time I got to where I was going
Went to catch a train to town this afternoon. No hurrying or anything. As I walked round to the station I noticed that my lower legs were starting to hurt. Not on my shins but to the sides of them a crampy kind of feeling - both legs, definitely didn’t feel good. By the time I got to where I was going
Fruitandnutcase
in
NRAS
5 years ago
I am 28 Year old male and I have EDS (Ehlers-Danlos syndrome) Everyone tells me that I have a soft body like a female. Is it related to EDS?
Hi Everyone. Last year I found out that I have EDS. I had hypermobility since I was a kid but from Last 3-4 years I started noticing that my body especially my upper arms, chest and belly started getting softer by day. I know that soft, doughy, smooth and velvety skin is a symptom of EDS but my body
Hi Everyone. Last year I found out that I have EDS. I had hypermobility since I was a kid but from Last 3-4 years I started noticing that my body especially my upper arms, chest and belly started getting softer by day. I know that soft, doughy, smooth and velvety skin is a symptom of EDS but my body
Alcatraz
in
Ehlers-Danlos Support UK
5 years ago
GingeMan
I started with PMR seven months ago just before I was due to have a knee replacement. I was on 15mg pred and my consultant refused to operate due to an increased risk of infection until my pred intake was 5mg or less. I am now on 5mg and doing OK and I have arranged an appointment with the consultant
I started with PMR seven months ago just before I was due to have a knee replacement. I was on 15mg pred and my consultant refused to operate due to an increased risk of infection until my pred intake was 5mg or less. I am now on 5mg and doing OK and I have arranged an appointment with the consultant
parsifalwiz
in
PMRGCAuk
5 years ago
EDS Patient Involvement Opportunity
***HeadsUp EDS Patients #InvolvementOpportunity*** ***Have your say in designing future research on childbearing with hypermobile Ehlers-Danlos syndrome*** Some researchers, including Dr Sally Pezaro, have recently been granted funding to do some research and professional & public engagement on the
***HeadsUp EDS Patients #InvolvementOpportunity*** ***Have your say in designing future research on childbearing with hypermobile Ehlers-Danlos syndrome*** Some researchers, including Dr Sally Pezaro, have recently been granted funding to do some research and professional & public engagement on the
Wendy39
in
LUPUS UK
5 years ago
Ginkgo Biloba for RLS
I took 60 mg of Ginkgo Biloba in the middle of awful sleepless night and slept like a baby till morning. Manufacturer: Jarrow Formulas from iherb.com. It was the very first time when I took Ginkgo in the middle of the night. Before I only used it during daytime and the same 60 mg gave me a headache.
I took 60 mg of Ginkgo Biloba in the middle of awful sleepless night and slept like a baby till morning. Manufacturer: Jarrow Formulas from iherb.com. It was the very first time when I took Ginkgo in the middle of the night. Before I only used it during daytime and the same 60 mg gave me a headache.
Alex2308
in
Restless Legs Syndrome
5 years ago
And another one to add to the mixture!
My rheumy research team sent me off to get a scan of my glands last November after I explained to them how very dry my mouth gets. This has been followed up my an appt at the Dental Hospital this morning. The ultrasound showed early Sjogrens. My greatest sympathy to all who have galloping Sjogrens.
My rheumy research team sent me off to get a scan of my glands last November after I explained to them how very dry my mouth gets. This has been followed up my an appt at the Dental Hospital this morning. The ultrasound showed early Sjogrens. My greatest sympathy to all who have galloping Sjogrens.
Lupiknits
in
LUPUS UK
6 years ago
What vitamins should you take?
What vitamins good for PMR? I am taking Multi vitamin Fish oils Calcium Magnesium Zinc B12 Collagen Glucosamine
What vitamins good for PMR? I am taking Multi vitamin Fish oils Calcium Magnesium Zinc B12 Collagen Glucosamine
jensen0518
in
PMRGCAuk
5 years ago
Baby grew only 3 days in a span of one week?!
My lmp was december 7, 2018 and my cycle usually is around 30 days. I got an immediate and dark positive on january 7, 2019. I finally went for my scan on february 2, making me around 8 weeks. Because i have a retroverted uterus, the scan took quite a while and finally got to see a gestational sac with
My lmp was december 7, 2018 and my cycle usually is around 30 days. I got an immediate and dark positive on january 7, 2019. I finally went for my scan on february 2, making me around 8 weeks. Because i have a retroverted uterus, the scan took quite a while and finally got to see a gestational sac with
AzifK
in
Pregnancy and Parenting Support
6 years ago
Gabapentin issues
Hi Been on this about 9 days. Started 100mg but for the last week been on 200mg at nite. I'm really not sure it's for me quite stimulating feel like im wired to a battery with buzing legs and it's killed my mood to bring tearful. Is a higher dose better. I'm due to try Pregabalin but I guess that would
Hi Been on this about 9 days. Started 100mg but for the last week been on 200mg at nite. I'm really not sure it's for me quite stimulating feel like im wired to a battery with buzing legs and it's killed my mood to bring tearful. Is a higher dose better. I'm due to try Pregabalin but I guess that would
Andyroo66
in
Restless Legs Syndrome
5 years ago
No Florence Nightingale
If you're at all interested... this post does becomes more relevant as you read on... Yesterday was my knee replacement surgery; it was originally scheduled for 9:00 am and then changed to 3:00. Well "Murphy's Law" then reared its ugly head and it became, 4:00, then 5:00, then 6:45! "Hungry? Me?
If you're at all interested... this post does becomes more relevant as you read on... Yesterday was my knee replacement surgery; it was originally scheduled for 9:00 am and then changed to 3:00. Well "Murphy's Law" then reared its ugly head and it became, 4:00, then 5:00, then 6:45! "Hungry? Me?
Hidden
in
PMRGCAuk
5 years ago
⚠️ pregnancy update - please don’t read if it’ll upset you ⚠️
Hi everyone, Thought I’d post a little update as I’ve been really worried about over sharing on here but today I can’t believe I’ve reached 28 weeks, the 3rd and final trimester. This week I’ve also been able to reflect a lot on my anxiety and have realised that its not just down to suffering 2 mmc
Hi everyone, Thought I’d post a little update as I’ve been really worried about over sharing on here but today I can’t believe I’ve reached 28 weeks, the 3rd and final trimester. This week I’ve also been able to reflect a lot on my anxiety and have realised that its not just down to suffering 2 mmc
E_05
in
Fertility Network UK
6 years ago
Good morning
Good morning all you beautiful people, just wondering if anyone takes codeine phosphate 15mg, going to give it a try. I have tried all the usual co-codamol etc but i think its the paracetamol mix that makes me sick.. Anything is worth a try to take the edge off the aches and pains we all suffer!
Good morning all you beautiful people, just wondering if anyone takes codeine phosphate 15mg, going to give it a try. I have tried all the usual co-codamol etc but i think its the paracetamol mix that makes me sick.. Anything is worth a try to take the edge off the aches and pains we all suffer!
Bootoo
in
NRAS
6 years ago
Omgoodness what a difference
Following on from my cry for help a couple weeks ago . I tried a couple of things . I was on 40mg of both citalopram and pramipexle and was augmenting and also ready for hitting my head off a wall . Over the 2 weeks I weaned from 40mg of citalopram to be only 5mg per day ...by the end of this week
Following on from my cry for help a couple weeks ago . I tried a couple of things . I was on 40mg of both citalopram and pramipexle and was augmenting and also ready for hitting my head off a wall . Over the 2 weeks I weaned from 40mg of citalopram to be only 5mg per day ...by the end of this week
Bradleycooperfan
in
Restless Legs Syndrome
6 years ago
Reglan
Has anyone with restless legs been able to tolerate Metoclopramide or are you guaranteed to get them.
Has anyone with restless legs been able to tolerate Metoclopramide or are you guaranteed to get them.
Mum007
in
Restless Legs Syndrome
6 years ago
Fetal chromosomal abnormality
Hi, I'm almost 17 weeks. About a week ago I had amnio after I had a positive result for XYY extra sex chromosome from the NIPT screening blood test. A day after the amnio procedure I got the preliminary Fish result which was consistent with the NIPT showing XYY. It might take another week to get the
Hi, I'm almost 17 weeks. About a week ago I had amnio after I had a positive result for XYY extra sex chromosome from the NIPT screening blood test. A day after the amnio procedure I got the preliminary Fish result which was consistent with the NIPT showing XYY. It might take another week to get the
Hilli
in
Pregnancy and Parenting Support
6 years ago
Here in the USA
I've noticed a lot of the post's are from across the pond, I'm 58 years old and have suffered from RLS my late teens in my case I have found that opiates have given me relief and yes I've tried everything and my pain pills and gabapentin 300 milgrms twice a day give me the relief so I'm not pacing the
I've noticed a lot of the post's are from across the pond, I'm 58 years old and have suffered from RLS my late teens in my case I have found that opiates have given me relief and yes I've tried everything and my pain pills and gabapentin 300 milgrms twice a day give me the relief so I'm not pacing the
Upallnight61
in
Restless Legs Syndrome
6 years ago
Hypermobile EDS??
Does anyone here have hyper mobile EDS and sleep with eyes partially open, have blue scerla in their eyes, and/or irritated vessels in the whites of their eye?
Does anyone here have hyper mobile EDS and sleep with eyes partially open, have blue scerla in their eyes, and/or irritated vessels in the whites of their eye?
Apaigemarko
in
Ehlers-Danlos Support UK
5 years ago
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