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Mast cell activation syndrome (MCAS)
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Non driving gene mutation-ASXL1
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
I have MF with JAK2 V617F for 10 years, now is taking Ruxotinib and Interferon . Spleen contraction and blood control are good. Although I took a lot of hormones, at least my fibrosis degree has been reversed, and the mutation rate has also decreased a lot. But I was found I have a new bad prognosis
merlisa
in
Fight MPN
2 years ago
Methadone RLS RESULTS
hello, i was curious I have refractory rls and even buphenorphine and Methadone don’t do much it’s so strange my body hates me lol Has anyone taken opiates and had them not to much for u? it’s so weird how some people it saves their life some people can’t handle side effects and others it does nothing
hello, i was curious I have refractory rls and even buphenorphine and Methadone don’t do much it’s so strange my body hates me lol Has anyone taken opiates and had them not to much for u? it’s so weird how some people it saves their life some people can’t handle side effects and others it does nothing
RC723
in
Restless Legs Syndrome
2 years ago
Comparison can be good for the soul...
I do not often write on here but it seemed these musing may be of interest to others so here goes... ONE of the great advantages I find from attending the courses run by the Pulmonary Rehabilitation Service (PRS) is comparison. And after today's session I feel encouraged. Not that I am significantly
I do not often write on here but it seemed these musing may be of interest to others so here goes... ONE of the great advantages I find from attending the courses run by the Pulmonary Rehabilitation Service (PRS) is comparison. And after today's session I feel encouraged. Not that I am significantly
Timberman
in
COPD Friends
2 years ago
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Advice please - Lyrica
For the last year or so I have been taking sinemet which usually relieved the RLS symptoms and enabled me to relax in the evening and sleep reasonably well. The inevitable augmentation occurred about a month ago and I have since stopped all but 1 cr25/100 an hour before bedtime. Recent evenings I spent
For the last year or so I have been taking sinemet which usually relieved the RLS symptoms and enabled me to relax in the evening and sleep reasonably well. The inevitable augmentation occurred about a month ago and I have since stopped all but 1 cr25/100 an hour before bedtime. Recent evenings I spent
Flora-Rose
in
Restless Legs Syndrome
2 years ago
Parkinsons
Was at hospital for check up and was told I had Parkinsons and to come of Pregabalin and Tramadol and star new medication tonight low dose for a week then increase second dose second week so we will see what happens just when I was okay with Pregabalin and Tramadol ,wonder about the restless legs if
Was at hospital for check up and was told I had Parkinsons and to come of Pregabalin and Tramadol and star new medication tonight low dose for a week then increase second dose second week so we will see what happens just when I was okay with Pregabalin and Tramadol ,wonder about the restless legs if
auldreekie18
in
Restless Legs Syndrome
2 years ago
sore feet possible peripheral neuropathy.
just seen the rheumatologist who very kindly fitted me in this week. Now getting tested for peripheral neuropathy. She thinks it most likely. Various drugs have been mentioned. Going forward anyone had any issues with medications for this? I'm only on hydroxy and pilocarpine at the moment. Luckily
just seen the rheumatologist who very kindly fitted me in this week. Now getting tested for peripheral neuropathy. She thinks it most likely. Various drugs have been mentioned. Going forward anyone had any issues with medications for this? I'm only on hydroxy and pilocarpine at the moment. Luckily
dg70
in
LUPUS UK
2 years ago
pramipexole and nasal congestion.
Hi everyone, I’ve just joined this group hoping for support I was a member years ago but lost touch unfortunately. I’ve had RLS for around 12 years and i class it as moderate- severe. I’m on Pramipexole (after being on Neupro patch for ten years though I tried many medications to even get there) .
Hi everyone, I’ve just joined this group hoping for support I was a member years ago but lost touch unfortunately. I’ve had RLS for around 12 years and i class it as moderate- severe. I’m on Pramipexole (after being on Neupro patch for ten years though I tried many medications to even get there) .
HelenJS
in
Restless Legs Syndrome
2 years ago
High HCG at 4 weeks (11dp5dt)... cause for concern?
Hey I wish I could just enjoy this moment but Doctor Google has terrified me again! Had my first HCG test at 9dp5dt and was delighted with 301 (especially after our chemical earlier this year ). Today's has come back as 816 so has more than doubled in 48 hours and seems very high for 4 weeks when
Hey I wish I could just enjoy this moment but Doctor Google has terrified me again! Had my first HCG test at 9dp5dt and was delighted with 301 (especially after our chemical earlier this year ). Today's has come back as 816 so has more than doubled in 48 hours and seems very high for 4 weeks when
Sarascottxox
in
Fertility Network UK
2 years ago
Diagnosed with RLS but not so sure, does it sound like I have it?
My Doctor has diagnosed me with RLS and said I need to start taking some medication called ropinirole. My symptoms are: for the last 4 months or so, when I sit in an armchair (usually with may legs folded and at my side) my buttock muscles keep tensing and untensing which causes my thighs to twitch
My Doctor has diagnosed me with RLS and said I need to start taking some medication called ropinirole. My symptoms are: for the last 4 months or so, when I sit in an armchair (usually with may legs folded and at my side) my buttock muscles keep tensing and untensing which causes my thighs to twitch
ljs007
in
Restless Legs Syndrome
2 years ago
Dry eye irritation
It doesn't sound much, does it, dry-eye irritation, but it's making my life an absolute misery. For two days now I haven't been able to read - my great pleasure in life - as the irritation is so bad compounded by the glare as well. Wearing dark glasses indoors is a sort of help but it's not enough
It doesn't sound much, does it, dry-eye irritation, but it's making my life an absolute misery. For two days now I haven't been able to read - my great pleasure in life - as the irritation is so bad compounded by the glare as well. Wearing dark glasses indoors is a sort of help but it's not enough
ANGIEIRISH
in
Macular Society
2 years ago
Late period after MMC.
After finally having our first IVF BFP following a DE FET it ended in a MMC. I had a managed miscarriage at home 7th May followed by surgery for retained tissue 31st May. I had a period 22nd June so hoped things were starting to get back to normal. I’m now on day 36 and no sign of a period 🥺.
After finally having our first IVF BFP following a DE FET it ended in a MMC. I had a managed miscarriage at home 7th May followed by surgery for retained tissue 31st May. I had a period 22nd June so hoped things were starting to get back to normal. I’m now on day 36 and no sign of a period 🥺.
Miracle43
in
Fertility Network UK
2 years ago
Methadone withdrawal without Rx
I take 15mg of Methadone two hours before my bedtime of 11pm. It is not a great cure by itself for me. I also take 1mg Nepro patch. Together it helps about 70-80%. Methadone seems like it reduces the intensity of the RLS symptoms but not the frequency. I think of it as palliative rather than therapeutic
I take 15mg of Methadone two hours before my bedtime of 11pm. It is not a great cure by itself for me. I also take 1mg Nepro patch. Together it helps about 70-80%. Methadone seems like it reduces the intensity of the RLS symptoms but not the frequency. I think of it as palliative rather than therapeutic
WelbyB
in
Restless Legs Syndrome
2 years ago
will these hot flashes ever end ?
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Mofred
in
PMRGCAuk
2 years ago
Opiods after stopping Rpinerol?
I finished taking Ropinerol about a week ago (gradually reducing the dose) but I'm still hardly getting any sleep and gabapentin isn't making any difference (I'm spacing out the dose 1200mg over several hours). I'm also taking a high strength valerian tablet and have tried CBD/THC too. Nothing seems
I finished taking Ropinerol about a week ago (gradually reducing the dose) but I'm still hardly getting any sleep and gabapentin isn't making any difference (I'm spacing out the dose 1200mg over several hours). I'm also taking a high strength valerian tablet and have tried CBD/THC too. Nothing seems
CrusoeCortez
in
Restless Legs Syndrome
2 years ago
Newly diagnosed - Hashimoto's question
Hello all. Having lurked here for the best part of a month and learned tons of informative stuff, I’m posting to ask for some specific advice. I was diagnosed as hypothyroid five weeks ago, after a couple of months of feeling terrible – exhausted, nauseous, aching, generally ill. After lots of investigations
Hello all. Having lurked here for the best part of a month and learned tons of informative stuff, I’m posting to ask for some specific advice. I was diagnosed as hypothyroid five weeks ago, after a couple of months of feeling terrible – exhausted, nauseous, aching, generally ill. After lots of investigations
Oreo11
in
Thyroid UK
2 years ago
8th day without requip now what?
Today is day 8 off requip. It is the first night I had 3.5 consecutive hours of sleep. Hopefully I will continue to improve. Despite taking 1800 mg of gabapentin stretched out over 8 hours before bedtime, 100mg of tramadol at bedtime, and a few grams of kratom at midnight when I wake up with bad
Today is day 8 off requip. It is the first night I had 3.5 consecutive hours of sleep. Hopefully I will continue to improve. Despite taking 1800 mg of gabapentin stretched out over 8 hours before bedtime, 100mg of tramadol at bedtime, and a few grams of kratom at midnight when I wake up with bad
Asquiva
in
Restless Legs Syndrome
2 years ago
Weaning off of Sinamet and Mirapex and onto Methadone
When I first started having RLS symptoms my family doctor tried to assist by giving me Sinemet and some other drug with alternating doses but it did not control the leg spasms so I started sleeping on the sofa and listening to the music of the Mystic Moods Orchestra. A fried had introduced me to their
When I first started having RLS symptoms my family doctor tried to assist by giving me Sinemet and some other drug with alternating doses but it did not control the leg spasms so I started sleeping on the sofa and listening to the music of the Mystic Moods Orchestra. A fried had introduced me to their
Tobias10
in
Restless Legs Syndrome
2 years ago
Progress ... ?
My doctor refused to give me the tests for iron deficiency that I asked for, saying that past tests showed my iron levels are fine. I contacted her again to explain how the tests I need now are different - copying out for her the relevant paragraphs from two research articles on the matter. I also sent
My doctor refused to give me the tests for iron deficiency that I asked for, saying that past tests showed my iron levels are fine. I contacted her again to explain how the tests I need now are different - copying out for her the relevant paragraphs from two research articles on the matter. I also sent
Desperate100
in
Restless Legs Syndrome
2 years ago
listening to music has transformed my sleep
I’ve suffered terribly from restless leg syndrome since I was a child. Only Having it diagnosed later in life. My RLS definitely comes and goes but when it’s at it’s peak it keeps me up in the night in levels of discomfort only a fellow RLS sufferer can understand. Recently I purchased some wireless
I’ve suffered terribly from restless leg syndrome since I was a child. Only Having it diagnosed later in life. My RLS definitely comes and goes but when it’s at it’s peak it keeps me up in the night in levels of discomfort only a fellow RLS sufferer can understand. Recently I purchased some wireless
LoulouPet
in
Restless Legs Syndrome
2 years ago
Go back on Pramaprexol?
I was on Miropex/Pramaprexol for 15 years for RLS until I augmented late 2021. I phased out the Pramapexol slowly as recommended by this site and Mayo Clinic(complete hell),as I began Gabapentin. I hated the side effects so switched to Pregabalin,which I also hated. I now take 100 MG of Tramadol
I was on Miropex/Pramaprexol for 15 years for RLS until I augmented late 2021. I phased out the Pramapexol slowly as recommended by this site and Mayo Clinic(complete hell),as I began Gabapentin. I hated the side effects so switched to Pregabalin,which I also hated. I now take 100 MG of Tramadol
SteveWess
in
Restless Legs Syndrome
2 years ago
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