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Sjogren-Larsson syndrome
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Vascular EDS gene testing in UK
Hello, I have a diagnosis of hypermobile EDS made clinically with no genetic testing, however two of my family members have features suggestive of vascular EDS (early prominent varicose veins, gingival recession, translucent skin, aortic aneurism (asymptomatic), easy large bruising and sparse thinning
Hello, I have a diagnosis of hypermobile EDS made clinically with no genetic testing, however two of my family members have features suggestive of vascular EDS (early prominent varicose veins, gingival recession, translucent skin, aortic aneurism (asymptomatic), easy large bruising and sparse thinning
bombsh3ll
in
Ehlers-Danlos Support UK
6 years ago
Giving up
Okay .. so I’m going to rant. I haven’t been able to get any sleep lately and the only time I do is if I take a bunch of medication to sleep which isn’t good for me. I’m still taking the second lowest dose of mirapex and it’s not doing anything at all.. taking magnesium 200mg a night and cutting back
Okay .. so I’m going to rant. I haven’t been able to get any sleep lately and the only time I do is if I take a bunch of medication to sleep which isn’t good for me. I’m still taking the second lowest dose of mirapex and it’s not doing anything at all.. taking magnesium 200mg a night and cutting back
Kittykat1234
in
Restless Legs Syndrome
6 years ago
Pregabalin users
Hi I've just finished withdrawal from Pramipexole now I'm taking Pregabalin 75mg along with Targinact 5mg/1.25mg prolonged release. I have been taking Pregabalin for a month but they don't seem to be working, I'm trying to get an at for my doctor tomorrow, is there anything else I should be taken to
Hi I've just finished withdrawal from Pramipexole now I'm taking Pregabalin 75mg along with Targinact 5mg/1.25mg prolonged release. I have been taking Pregabalin for a month but they don't seem to be working, I'm trying to get an at for my doctor tomorrow, is there anything else I should be taken to
7681
in
Restless Legs Syndrome
6 years ago
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Getting a consultant referral for a CT-PET scan for relapsing polychondritis?
About 2 months ago, I started noticing chunks of my face rapidly atrophying - nose cartilage and around eyes especially, but also my jaw bone decreased by almost half, causing my friends to ask what had happened to my face. I told the doctors - they insinuated I was crazy. It continued. I became very
About 2 months ago, I started noticing chunks of my face rapidly atrophying - nose cartilage and around eyes especially, but also my jaw bone decreased by almost half, causing my friends to ask what had happened to my face. I told the doctors - they insinuated I was crazy. It continued. I became very
Sarah030609
in
LUPUS UK
6 years ago
Has anyone tried memantine for restless legs?
I don’t have RLS, but my husband does, and I feel like it is stealing our lives. It has caused mood dysregulation and fatigue. The pramipexole he has been taking is not as effective, and I’m searching for another answer. I’m very intrigued by the glutamate hypothesis and therefore am interested in
I don’t have RLS, but my husband does, and I feel like it is stealing our lives. It has caused mood dysregulation and fatigue. The pramipexole he has been taking is not as effective, and I’m searching for another answer. I’m very intrigued by the glutamate hypothesis and therefore am interested in
Cabaker
in
Restless Legs Syndrome
6 years ago
What hurts less?
Until now I have been using Otrexup ( an auto inject pen of methotrexate). Due to cost, I will now need to switch over to methotrexate where you fill the syringe from a vial. So my question is, which hurts more auto or syringe?? My sister is a nurse and will give me the weekly injection until I can muster
Until now I have been using Otrexup ( an auto inject pen of methotrexate). Due to cost, I will now need to switch over to methotrexate where you fill the syringe from a vial. So my question is, which hurts more auto or syringe?? My sister is a nurse and will give me the weekly injection until I can muster
sara1215
in
NRAS
6 years ago
GSK plans break-up after £10bn Pfizer deal
Just a snippet to inform you of major corporate changes in the world of pharma. The impact on us is not at all clear. Might be next to nothing. [i]
GSK plans break-up after £10bn Pfizer deal
US firm to buy into consumer healthcare portfolio and pave way for long-term spin-off of drugs business
Just a snippet to inform you of major corporate changes in the world of pharma. The impact on us is not at all clear. Might be next to nothing. [i]
GSK plans break-up after £10bn Pfizer deal
US firm to buy into consumer healthcare portfolio and pave way for long-term spin-off of drugs business
helvella
Thyroid UK
in
Thyroid UK
6 years ago
Spinal cord stimulator for RLS?
My pain doctor who is prescribing me my tramadol and Lyrica is considering a spinal cord stimulator as a possible way to control this. Does anybody know anything about using a spinal cord stimulator for RLS? I tried doing a search on here but nothing came up.
My pain doctor who is prescribing me my tramadol and Lyrica is considering a spinal cord stimulator as a possible way to control this. Does anybody know anything about using a spinal cord stimulator for RLS? I tried doing a search on here but nothing came up.
LanaCSR
in
Restless Legs Syndrome
6 years ago
Friend's sad scan news
Hi All, I am posting to get some advice about a friend of mine. She is currently pregnant with twins (10 wks) and had her harmony/panarama tests yesterday. She has had 14 miscarriages and still fighting this fertility battle. She had mixed news yesterday with one twin being fine and the other twin has
Hi All, I am posting to get some advice about a friend of mine. She is currently pregnant with twins (10 wks) and had her harmony/panarama tests yesterday. She has had 14 miscarriages and still fighting this fertility battle. She had mixed news yesterday with one twin being fine and the other twin has
cryst4l
in
Fertility Network UK
6 years ago
Just diagnosed and scared.
Two years ago I was diagnosed with Lupus because of symptoms and positive ANA. Last month I decided to get a second opinion because I felt as though my Rheumatologist was cold and wasn't helping. My new rheumy ran a series of tests and found that my liver enzymes were very high and I was again had a
Two years ago I was diagnosed with Lupus because of symptoms and positive ANA. Last month I decided to get a second opinion because I felt as though my Rheumatologist was cold and wasn't helping. My new rheumy ran a series of tests and found that my liver enzymes were very high and I was again had a
Sandb26
in
PBC Foundation
6 years ago
No restless legs
Four weeks without restless leg! How amazing! I broke my femur and have been on morphine, but now my patch has run out and it’s back with avengeance! There must be a strong painkiller that’s not addictive?
Four weeks without restless leg! How amazing! I broke my femur and have been on morphine, but now my patch has run out and it’s back with avengeance! There must be a strong painkiller that’s not addictive?
Bee27
in
Restless Legs Syndrome
6 years ago
refractory RLS, taking morphine
I have been almost two weeks on time release morphine 30 mg, which I take about 7 PM, and it lasts 12 hours, to help me sleep. I tried 15 mg, which worked for about 6 nights, and then worked less and less until not working at all. (During the last three months, I got off 1 mg of pramipexole, and I
I have been almost two weeks on time release morphine 30 mg, which I take about 7 PM, and it lasts 12 hours, to help me sleep. I tried 15 mg, which worked for about 6 nights, and then worked less and less until not working at all. (During the last three months, I got off 1 mg of pramipexole, and I
byrnzy4
in
Restless Legs Syndrome
6 years ago
Restless Legs Medication
I have severe RLS and tried several dopamine type medicins. Unfortunately severe augemntation after several months. I needed more and more.. Consequences: RLS symptoms started during the day more severe and also in arms.. Thereafter I have been on Neupro and Lyrica. It seems that I get augmentation
I have severe RLS and tried several dopamine type medicins. Unfortunately severe augemntation after several months. I needed more and more.. Consequences: RLS symptoms started during the day more severe and also in arms.. Thereafter I have been on Neupro and Lyrica. It seems that I get augmentation
brt53
in
Restless Legs Syndrome
6 years ago
Made it through the "holiday" (many thanks for your support) - what now?
I am on day 40 of my rehab, first 15 days of a "holiday" from Pram (I hate the term because the experience is really is the torture of sleep deprivation, but I am thankful for the support I received from many of you), 25 days searching for a combination of meds and dosages to replace Pram. I live in
I am on day 40 of my rehab, first 15 days of a "holiday" from Pram (I hate the term because the experience is really is the torture of sleep deprivation, but I am thankful for the support I received from many of you), 25 days searching for a combination of meds and dosages to replace Pram. I live in
dontsleepmuch
in
Restless Legs Syndrome
6 years ago
Rayos and Plaquenil and burning feet
I was wondering if anyone is on rayos and or plaquenil and experiencing sore and burning feet? My feet are painful to walk on them and they burn almost all the time. I am not diabetic and the foot dr. can't find anything wrong. That just leaves medication as being the problem. I have been on both of
I was wondering if anyone is on rayos and or plaquenil and experiencing sore and burning feet? My feet are painful to walk on them and they burn almost all the time. I am not diabetic and the foot dr. can't find anything wrong. That just leaves medication as being the problem. I have been on both of
Linny3
in
PMRGCAuk
6 years ago
Neurology, Oxycodone, and only two days until I finally give up Ropinirole!
Hello all I’ve not been able to post earlier as I was without Internet access for three weeks – what did we do before we had it!!! I am now down to 0.25mg Ropinirole. I’m glad I didn’t keep reducing when I was coming up to the concert (which went well enough!). But reduced that night and again six
Hello all I’ve not been able to post earlier as I was without Internet access for three weeks – what did we do before we had it!!! I am now down to 0.25mg Ropinirole. I’m glad I didn’t keep reducing when I was coming up to the concert (which went well enough!). But reduced that night and again six
RosieRow
in
Restless Legs Syndrome
6 years ago
Alternative treatments for RLS.
Hi mtm19,Tim61, I posted recently about withdrawing from Pramipexole, which I’m doing at the moment, not very nice. My GP eventually discovered I was suffering with myoclonic jerks, not restless leg syndrome. I saw him yesterday’ & he has agreed to try keppra ( levetiracetam) 250mg at night. I took
Hi mtm19,Tim61, I posted recently about withdrawing from Pramipexole, which I’m doing at the moment, not very nice. My GP eventually discovered I was suffering with myoclonic jerks, not restless leg syndrome. I saw him yesterday’ & he has agreed to try keppra ( levetiracetam) 250mg at night. I took
Tim61
in
Restless Legs Syndrome
6 years ago
problems with preterm labor because of Polyhydramnios?
I was diagnosed suddenly at 26 weeks with Polyhydramnios I gained 14 pounds in two weeks from 24 to 26. Had a anatomy scan done to see my son has part of his intestines outside of his body but in a sac to protect them, he will need surgery when he’s born. There was no other indication of why I have Polyhydramnios
I was diagnosed suddenly at 26 weeks with Polyhydramnios I gained 14 pounds in two weeks from 24 to 26. Had a anatomy scan done to see my son has part of his intestines outside of his body but in a sac to protect them, he will need surgery when he’s born. There was no other indication of why I have Polyhydramnios
Tryingmybestwith4
in
Pregnancy and Parenting Support
6 years ago
Worries about friend on ice
Does ice meth do anything to your body long term, my bestie uses and I was wondering as she has Hashimoto's disease as well, thyroid is dead.. what's the outcome please
Does ice meth do anything to your body long term, my bestie uses and I was wondering as she has Hashimoto's disease as well, thyroid is dead.. what's the outcome please
Tanyamaree1971
in
Thyroid UK
6 years ago
Restless sleep
Does anyone else experience restless sleep and take any supplements or natural rememdies to counteract it? By restless I mean that I toss and turn quite a bit and kick my legs. It doesn’t really wake me but it disturbs my partner. I’m going to up my dosage of CBD oil to a full dropper per night rather
Does anyone else experience restless sleep and take any supplements or natural rememdies to counteract it? By restless I mean that I toss and turn quite a bit and kick my legs. It doesn’t really wake me but it disturbs my partner. I’m going to up my dosage of CBD oil to a full dropper per night rather
C2a2o2
in
Ataxia UK
6 years ago
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