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Williams syndrome
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Parotid removal and Hydroxychloroquine
Hi everyone, thanks for having me. I've had Sjogrens since interferon treatment 10 years ago and recently needed a troublesome parotid gland removed due to unidentified lumps and chronic pain and swelling. Am awaiting biopsy results, I've previously had mediastinal lymphoma. I was also recommenced
Hi everyone, thanks for having me. I've had Sjogrens since interferon treatment 10 years ago and recently needed a troublesome parotid gland removed due to unidentified lumps and chronic pain and swelling. Am awaiting biopsy results, I've previously had mediastinal lymphoma. I was also recommenced
MajorTom
in
The Australian Sjögren's Syndrome Association
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
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
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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
Mucuna Puriens
Was just reading a post from the Parkinsons Movement side of Health Unlocked regarding the use of Mucuna root. I took myself off of Mirapex and use Mucuna Puriens for my dopamine needs, Valerian Root and melatonin for sleep. Anyone else using supplements rather than pharma y?
Was just reading a post from the Parkinsons Movement side of Health Unlocked regarding the use of Mucuna root. I took myself off of Mirapex and use Mucuna Puriens for my dopamine needs, Valerian Root and melatonin for sleep. Anyone else using supplements rather than pharma y?
eglimark
in
Restless Legs Syndrome
6 years ago
How do I get corticosteroid prescription before diagnosis of condition?
Hi there, Over the past 2 months I've experienced a rapid shrinkage of seemingly cartilage (but perhaps bone) everywhere in my body. The doctors at first thought I was making it up but now the signs are too much to ignore. A specialist agreed that there is an issue but he couldn't diagnose it at the
Hi there, Over the past 2 months I've experienced a rapid shrinkage of seemingly cartilage (but perhaps bone) everywhere in my body. The doctors at first thought I was making it up but now the signs are too much to ignore. A specialist agreed that there is an issue but he couldn't diagnose it at the
Sarah030609
in
LUPUS UK
6 years ago
Which therapy helped you the most?
Can people say which of these helped them the most? I don't think there's an option for adding a poll. Dopamine agonists: These are most often the first medicines used to treat RLS. These drugs, including pramipexole (Mirapex), rotigotine (Neupro), and ropinirole (Requip), act like the neurotransmitter
Can people say which of these helped them the most? I don't think there's an option for adding a poll. Dopamine agonists: These are most often the first medicines used to treat RLS. These drugs, including pramipexole (Mirapex), rotigotine (Neupro), and ropinirole (Requip), act like the neurotransmitter
Hgaguk89
in
Restless Legs Syndrome
6 years ago
Fibro is bad
I’ve had fibromyalgia since 2009 when I had a triple aaa dissection since this happened to me I’ve had no end of issues. Now I had a knee replacement and since this I’ve been in constant pain day and night for two years. These last few days have been so bad I don’t know how to cope anymore Please any
I’ve had fibromyalgia since 2009 when I had a triple aaa dissection since this happened to me I’ve had no end of issues. Now I had a knee replacement and since this I’ve been in constant pain day and night for two years. These last few days have been so bad I don’t know how to cope anymore Please any
Whitbyjet
in
Fibromyalgia Action UK
6 years ago
Does anyone know about Flecainide and Nebivolol together?
Hi, I'm new here but it's time for me to 'jump in'. I have been following the posts on here for a while now, finding them both interesting and informative, sometimes even quite amusing. A few weeks ago the decision was made to change my 50mg flecainide PIP to a regular dose (2 x 50mg) one in the morning
Hi, I'm new here but it's time for me to 'jump in'. I have been following the posts on here for a while now, finding them both interesting and informative, sometimes even quite amusing. A few weeks ago the decision was made to change my 50mg flecainide PIP to a regular dose (2 x 50mg) one in the morning
Patsy10
in
AF Association
6 years ago
Birth partner...
Soo here we go.... My husband's best friend and his wife are expecting she got pregnant on first try despite the fact she got the morning after pill.. Long story short, she has no friends here, no family, nobody... She is now in the hospital just been induced and I'm her second birth partner... I said
Soo here we go.... My husband's best friend and his wife are expecting she got pregnant on first try despite the fact she got the morning after pill.. Long story short, she has no friends here, no family, nobody... She is now in the hospital just been induced and I'm her second birth partner... I said
Klndmr
in
Fertility Network UK
6 years ago
EDS and cold weather
Hello! I’m new and wanted to ask about your experiences with EDS and cold weather, as well as sacroiliac joint dysfunction. I’m looking to chat about symptoms and discuss what has worked for you!
Hello! I’m new and wanted to ask about your experiences with EDS and cold weather, as well as sacroiliac joint dysfunction. I’m looking to chat about symptoms and discuss what has worked for you!
carleton
in
Ehlers-Danlos Support UK
6 years ago
Anyone here with negative ANA results?
Hi, I've recently seen a consultant at the Royal Infirmary in Glasgow, who tells me that he is highly confident that I don't in fact have scleroderma, mainly based on the fact that my ANA results were negative. I'm not 100% convinced as I thought there was a reasonably high false negative rate. Does
Hi, I've recently seen a consultant at the Royal Infirmary in Glasgow, who tells me that he is highly confident that I don't in fact have scleroderma, mainly based on the fact that my ANA results were negative. I'm not 100% convinced as I thought there was a reasonably high false negative rate. Does
puggyboy
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Slowing down on Ropinirole withdrawal
Sorry not to have posted my report on withdrawing from Ropinirole at the beginning of the week but a) things weren’t that great and b) I was so busy that I didn’t have a spare minute before needing to be away for meetings for three days. Things haven’t been great as Tramadol, on the three occasions
Sorry not to have posted my report on withdrawing from Ropinirole at the beginning of the week but a) things weren’t that great and b) I was so busy that I didn’t have a spare minute before needing to be away for meetings for three days. Things haven’t been great as Tramadol, on the three occasions
RosieRow
in
Restless Legs Syndrome
6 years ago
Could this solve recurring UTIs that many of us suffer with?
Saw a lovely new GP today who may have struck gold re why I have been thwarted with recurrent UTIs for three years. Sometimes, even though there is blood in urine, results show no presence of UTI. So I was fast tracked for cancer tests, however all came back negative - thank goodness. So went to see
Saw a lovely new GP today who may have struck gold re why I have been thwarted with recurrent UTIs for three years. Sometimes, even though there is blood in urine, results show no presence of UTI. So I was fast tracked for cancer tests, however all came back negative - thank goodness. So went to see
Marilyn1959
in
PMRGCAuk
6 years ago
Contraception? Endometriosis and hypermobility
Hiya, I wondered if anyone had any advice as to what contraception worked best for them if they suffer from both endometriosis and hypermobility. Endo is of course fuelled by estrogen but then hypermobility is fuelled by progresterone. While waiting for my surgery date I've been put on Cerelle, a
Hiya, I wondered if anyone had any advice as to what contraception worked best for them if they suffer from both endometriosis and hypermobility. Endo is of course fuelled by estrogen but then hypermobility is fuelled by progresterone. While waiting for my surgery date I've been put on Cerelle, a
jennt0506
in
Endometriosis UK
6 years ago
EDS Dentist Recommendations (London..Herts..)
Hello, I have been having gum problems which could be EDS related or something else connected with Hypermobility disorders. Just wanted to ask if anyone could recommend a dentist or dental practice which has knowledge of EDS? Thanks!
Hello, I have been having gum problems which could be EDS related or something else connected with Hypermobility disorders. Just wanted to ask if anyone could recommend a dentist or dental practice which has knowledge of EDS? Thanks!
MontgomeryJ
in
Ehlers-Danlos Support UK
6 years ago
Thanksgiving and a Question
I thank God for this website every day since I found it. I was at my lowest of low points with RLS this summer. I had to take a leave of absence from my teaching job. I was going through augmentation and withdrawl from requip at the same time.My doctors at Johns Hopkins were not helping. They didnt
I thank God for this website every day since I found it. I was at my lowest of low points with RLS this summer. I had to take a leave of absence from my teaching job. I was going through augmentation and withdrawl from requip at the same time.My doctors at Johns Hopkins were not helping. They didnt
Jrskyhook32
in
Restless Legs Syndrome
6 years ago
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