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Mast cell activation syndrome (MCAS)
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Saved by Methadone
After years on Pramipexole 0.75 mg long acting , the inevitable augmentation occurred and I got off it with great difficulty. Since that time, August 2019, I have had very little sleep. I have tried tramadol, codeine, oxycodone, lyrica, Gabapentin, clonazepam, MSContin and various combinations. I have
After years on Pramipexole 0.75 mg long acting , the inevitable augmentation occurred and I got off it with great difficulty. Since that time, August 2019, I have had very little sleep. I have tried tramadol, codeine, oxycodone, lyrica, Gabapentin, clonazepam, MSContin and various combinations. I have
wairoa36
in
Restless Legs Syndrome
4 years ago
OVERCOMING GVHD AFTER ASCT
Post by MPN-MATE Admin » Thu Jul 16, 2020 9:56 am Morning all... :D For some of us here, (but hopefully not all...?), some may eventually have to travel down the path of having an Allogenic Stem Cell Transplant (ASCT), when and if it becomes necessary... ... If, and when that occurs, one of the known
Post by MPN-MATE Admin » Thu Jul 16, 2020 9:56 am Morning all... :D For some of us here, (but hopefully not all...?), some may eventually have to travel down the path of having an Allogenic Stem Cell Transplant (ASCT), when and if it becomes necessary... ... If, and when that occurs, one of the known
socrates_8
in
MPN Voice
4 years ago
Medicheck results - am I a poor converter?
Hello there, I had a Medicheck thyroid test as my GP says I'm well within range on my TSH 1.29 (0.3 - 4.2), the only test he ordered to check if 100mg of Levo was right for me. I had asked for FT4 and FT3 but they weren't done, surprise. My Medicheck results are TSH 0.805 (0.27 - 4.2) FT4 19
Hello there, I had a Medicheck thyroid test as my GP says I'm well within range on my TSH 1.29 (0.3 - 4.2), the only test he ordered to check if 100mg of Levo was right for me. I had asked for FT4 and FT3 but they weren't done, surprise. My Medicheck results are TSH 0.805 (0.27 - 4.2) FT4 19
Sarfran
in
Thyroid UK
4 years ago
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IcyHot for RLS
IcyHot, sold in the US, is helping me with my RLS. It is similar to Aspercreme, the only difference is IcyHot has MENTHOL in it. Menthol is the ingredient that helps cure with RLS!. It is true!! I am using it, as a matter of fact, I haven't had the need to use it in the last week. It is like a miracle
IcyHot, sold in the US, is helping me with my RLS. It is similar to Aspercreme, the only difference is IcyHot has MENTHOL in it. Menthol is the ingredient that helps cure with RLS!. It is true!! I am using it, as a matter of fact, I haven't had the need to use it in the last week. It is like a miracle
Micafe
in
Restless Legs Syndrome
4 years ago
False/positive results
I am on a methadone clinic. I have been on it for 6 years. In 2016, I started testing positive on the Dip test for Fentanyl. The clinic would send out the positive urine test to be confirmed. It would come back Negative from the lab. I am only coming up positive certain tests. The last test came back
I am on a methadone clinic. I have been on it for 6 years. In 2016, I started testing positive on the Dip test for Fentanyl. The clinic would send out the positive urine test to be confirmed. It would come back Negative from the lab. I am only coming up positive certain tests. The last test came back
Jewel_7Aniver
in
NRAS
4 years ago
Finally a diagnosis
Hi everyone - thanks for your kind & helpful messages since a joined a few weeks ago. My rheumatologist has diagnosed palindromic rheumatism and fibromyalgia. Prescribed Amitriptyline. It’s a relief knowing what is wrong, now I can start find out how to manage it. Has anyone else found Amitriptyline
Hi everyone - thanks for your kind & helpful messages since a joined a few weeks ago. My rheumatologist has diagnosed palindromic rheumatism and fibromyalgia. Prescribed Amitriptyline. It’s a relief knowing what is wrong, now I can start find out how to manage it. Has anyone else found Amitriptyline
Sunnyseas
in
NRAS
4 years ago
Kate Gilbert’s book. Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition.
I just had to write to say how good this book is and I couldn’t recommend it more highly. I know many of you will already know it well but I’ve only just read it and apart from finding it full of useful information I was surprised at how enjoyable it was to read. I hadn’t bothered with it earlier in
I just had to write to say how good this book is and I couldn’t recommend it more highly. I know many of you will already know it well but I’ve only just read it and apart from finding it full of useful information I was surprised at how enjoyable it was to read. I hadn’t bothered with it earlier in
Seraphina56
in
PMRGCAuk
4 years ago
Why can't I be happy?!
I feel I need to apologise about my post before I even start, as I'm sure it will sound silly and ridiculous. My husband had a stem cell transplant in January after being diagnosed with all last year. His counts are all good so far, he feels well in himself. I've recently had to return to work, so back
I feel I need to apologise about my post before I even start, as I'm sure it will sound silly and ridiculous. My husband had a stem cell transplant in January after being diagnosed with all last year. His counts are all good so far, he feels well in himself. I've recently had to return to work, so back
Clarence45
in
Positive Wellbeing During Self-Isolation
4 years ago
PBC and stem cells
Hello- I am newly diagnosed with PBC and am curious if anyone here has done a stem cell transplant to reverse/treat your PBC,?
Hello- I am newly diagnosed with PBC and am curious if anyone here has done a stem cell transplant to reverse/treat your PBC,?
K-nirk
in
PBCers Organization
4 years ago
IM IN A STATE OF CONFUSION! I desperately need help to understand and actions to take following recent blood results.
My GP reduced my levo thyroxine from 100mcg to 75mcg, at beginning of March, as my TSH was 0.13 (0.27-4.2)..... T4 was21.1 (12-22) T3 was 4.9 (3.1-6.8) Of course he thinks that TSH is the most important reading , 😡 and I hadn’t the energy to dispute it . Was supposed to be retested in 6 weeks but
My GP reduced my levo thyroxine from 100mcg to 75mcg, at beginning of March, as my TSH was 0.13 (0.27-4.2)..... T4 was21.1 (12-22) T3 was 4.9 (3.1-6.8) Of course he thinks that TSH is the most important reading , 😡 and I hadn’t the energy to dispute it . Was supposed to be retested in 6 weeks but
Golli
in
Thyroid UK
4 years ago
Anyone else with RLS & mind racing? Poor quality sleep.....
My RLS is under control with dopamine agents, insofar as the sensation in my legs is concerned...but my mind is constantly active and I don't sleep deeply at all. It's not consistent, sometimes it's worse than other times. I know the drugs can cause insomnia. I don't have a problem falling asleep, usually
My RLS is under control with dopamine agents, insofar as the sensation in my legs is concerned...but my mind is constantly active and I don't sleep deeply at all. It's not consistent, sometimes it's worse than other times. I know the drugs can cause insomnia. I don't have a problem falling asleep, usually
silkusmaximus
in
Restless Legs Syndrome
4 years ago
European Headache Federation recommendations for neurologists managing giant cell arteritis - 17 Mch 2020
I found this today which I hope is useful as it is very recent. https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-020-01093-7?fbclid=IwAR1i7sx8Kt7LSlfbwdRfOCRBz9By1CN1ypVSHXPORkD4ownoa_pTCc2xj0M
I found this today which I hope is useful as it is very recent. https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-020-01093-7?fbclid=IwAR1i7sx8Kt7LSlfbwdRfOCRBz9By1CN1ypVSHXPORkD4ownoa_pTCc2xj0M
Sefu
in
PMRGCAuk
4 years ago
Less than satisfactory telephone consultation
Hi all , after singing the praises of the dentist last week I have had a very disappointing consultant appointment today. Firstly it wasn’t a consultant but one of the team. Having discussed my medication and health, he went off to discuss with the consultant that I had stopped the methotrexate. He came
Hi all , after singing the praises of the dentist last week I have had a very disappointing consultant appointment today. Firstly it wasn’t a consultant but one of the team. Having discussed my medication and health, he went off to discuss with the consultant that I had stopped the methotrexate. He came
Devoid
in
PMRGCAuk
4 years ago
Early period or pregnancy
Hi. I had a missed miscarriage when I had to take Misoprostol in the first week of April. I got my first period on 12 May. Now three weeks later I've been getting pain in my lower abdomen and pink discharge. Do you think I am pregnant again or is it an early period? I never missed my 28 day cycle so
Hi. I had a missed miscarriage when I had to take Misoprostol in the first week of April. I got my first period on 12 May. Now three weeks later I've been getting pain in my lower abdomen and pink discharge. Do you think I am pregnant again or is it an early period? I never missed my 28 day cycle so
Hidden
in
Pregnancy and Parenting Support
4 years ago
Ropinarole
I was on ropinarole for 10 years and progressed from 1mg to 3mg and it still worked for my restless leg and the only reason I came off it was because I couldn't sleep and had heard of augument in relation to these tablets. Since I have come off them nothing else seems to work for me ie Gabapentin Pregabalin
I was on ropinarole for 10 years and progressed from 1mg to 3mg and it still worked for my restless leg and the only reason I came off it was because I couldn't sleep and had heard of augument in relation to these tablets. Since I have come off them nothing else seems to work for me ie Gabapentin Pregabalin
Jenkins1414
in
Restless Legs Syndrome
4 years ago
Blood Test Results ( 3rd attempt lol )
Hi everyone , hope you are all keeping well in these trying times . Not been here for a while as have had so much going on since this time last year . Just got my latest blood test results back from Medichecks and they re not looking too bad , but am at a bit of a loss , because am feeling very much
Hi everyone , hope you are all keeping well in these trying times . Not been here for a while as have had so much going on since this time last year . Just got my latest blood test results back from Medichecks and they re not looking too bad , but am at a bit of a loss , because am feeling very much
Sweetpea1157
in
Thyroid UK
4 years ago
Opiates for treatment
54 yr sufferer here: SEVERE RLS in legs, hips and arms) with PLMD (I thrash 250 times/hr while asleep). FINALLY, relief: low doses of Methadone and Morphine taken over 6 hrs (5-11pm) have changed my life. I have had to increase both slowly, but I’m 75 so who cares?! No addiction problems. Also lots and
54 yr sufferer here: SEVERE RLS in legs, hips and arms) with PLMD (I thrash 250 times/hr while asleep). FINALLY, relief: low doses of Methadone and Morphine taken over 6 hrs (5-11pm) have changed my life. I have had to increase both slowly, but I’m 75 so who cares?! No addiction problems. Also lots and
Hidden
in
Restless Legs Syndrome
4 years ago
Chronic Fatigue Study
I came across this, and thought some of our members diagnosed with chronic fatigue might be interested in signing up: https://www.theguardian.com/society/2020/jun/23/uk-to-launch-genetic-study-chronic-fatigue-syndrome-cfs?CMP=share_btn_fb&fbclid=IwAR0d1eOCfiYLbj1YRNoaE-UB88_1aKWm4g9DotCR2gqM8PEequMzQWj6Gn4
I came across this, and thought some of our members diagnosed with chronic fatigue might be interested in signing up: https://www.theguardian.com/society/2020/jun/23/uk-to-launch-genetic-study-chronic-fatigue-syndrome-cfs?CMP=share_btn_fb&fbclid=IwAR0d1eOCfiYLbj1YRNoaE-UB88_1aKWm4g9DotCR2gqM8PEequMzQWj6Gn4
Cooper27
in
Thyroid UK
4 years ago
Blood results part 2
As requested by a few people here , here are my results in a better format ; CRP HS 2.63 mg/ L range = <5 FERRITIN 110ug/ L range = 13 - 150 FOLATE >19.8ug/ L range = >3.89 VIT B12 >150pmol/ L range = 37.5-187.5 VIT D 96nmol/ L range =50 - 175 TSH 0.013mlU/
As requested by a few people here , here are my results in a better format ; CRP HS 2.63 mg/ L range = <5 FERRITIN 110ug/ L range = 13 - 150 FOLATE >19.8ug/ L range = >3.89 VIT B12 >150pmol/ L range = 37.5-187.5 VIT D 96nmol/ L range =50 - 175 TSH 0.013mlU/
Sweetpea1157
in
Thyroid UK
4 years ago
Advise please on Pregabalin
Hi, I’ve previously had advise when I was taking Ropinirole. I was on this drug for 11 years ended up augmenting and acquiring a gambling habit. I was advised to come off the Ropinirole which I did, taking a long and painful time doing so. I took a couple of Codeine to help me at the end. Since then
Hi, I’ve previously had advise when I was taking Ropinirole. I was on this drug for 11 years ended up augmenting and acquiring a gambling habit. I was advised to come off the Ropinirole which I did, taking a long and painful time doing so. I took a couple of Codeine to help me at the end. Since then
Scattypatty
in
Restless Legs Syndrome
4 years ago
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