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Mast cell activation syndrome (MCAS)
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Co-codamol any good for RLS or PLMD?
I asked my GP for buprenorphine. He gave me co-codamol. Does anyone have any personal experience of this opioid? I'm not in pain, but have PLMD. I'd love to know if anyone has used co-codamol - and how they took it - and what their experience of it has been.
I asked my GP for buprenorphine. He gave me co-codamol. Does anyone have any personal experience of this opioid? I'm not in pain, but have PLMD. I'd love to know if anyone has used co-codamol - and how they took it - and what their experience of it has been.
pianoplayerPLMD
in
Restless Legs Syndrome
7 months ago
Results guidance please
Hello, Please could I ask for some advice on my recent blood test results? I’m on a journey to understanding the link between thyroid function and repeated miscarriages (I’ve put more details in my bio section). These were my results from December 2023 (from blue horizon). I spoke to a private endocrinologist
Hello, Please could I ask for some advice on my recent blood test results? I’m on a journey to understanding the link between thyroid function and repeated miscarriages (I’ve put more details in my bio section). These were my results from December 2023 (from blue horizon). I spoke to a private endocrinologist
Treesandleaves
in
Thyroid UK
6 months ago
Pain management
Dear Friends: I am currently taking 20mg Methadone daily for RLS and will have painful hand surgery soon. Because Methadone blunts effects of opioids I am concerned about pain management. Any ideas how best to handle? Thank you.
Dear Friends: I am currently taking 20mg Methadone daily for RLS and will have painful hand surgery soon. Because Methadone blunts effects of opioids I am concerned about pain management. Any ideas how best to handle? Thank you.
JustVisiting23
in
Restless Legs Syndrome
7 months ago
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SCT journey update No.4
Hi all, just to give you an update on my journey towards my *Allogenic Stem cell Transplant. Last tests @ Addenbrookes yesterday, was a very early start as Lung function testing was @ 8.30am and it’s about 2 hour journey. Wife and I were up about 3-4am ( to be fair, couldn’t sleep anyway ) The drive
Hi all, just to give you an update on my journey towards my *Allogenic Stem cell Transplant. Last tests @ Addenbrookes yesterday, was a very early start as Lung function testing was @ 8.30am and it’s about 2 hour journey. Wife and I were up about 3-4am ( to be fair, couldn’t sleep anyway ) The drive
LFCLove
in
MPN Voice
5 days ago
ASXL1 mutation 39% Worried about MF turning into leukemia
Hello Everyone, I have almost taken Rux for more than 7 years. and added interferon during the time. Actually my platelets are already very low now because of prolonged suppression of signaling pathways and the use of interferon. China site only available Rux in the markets. and I also have the ASXL1
Hello Everyone, I have almost taken Rux for more than 7 years. and added interferon during the time. Actually my platelets are already very low now because of prolonged suppression of signaling pathways and the use of interferon. China site only available Rux in the markets. and I also have the ASXL1
merlisa
in
Fight MPN
7 days ago
Continued Journey
I’ve had the Bone Marrow Transplant!!! That was actually the easiest part. 5 hours of fluids leading up to the BMT and the previous 5 days of chemo infusions (day5 was the worst) were much harder. Chemo: Fladarabine -6 thru-2 with addition of Melphalan on day-2. When you start treatment (chemo) for
I’ve had the Bone Marrow Transplant!!! That was actually the easiest part. 5 hours of fluids leading up to the BMT and the previous 5 days of chemo infusions (day5 was the worst) were much harder. Chemo: Fladarabine -6 thru-2 with addition of Melphalan on day-2. When you start treatment (chemo) for
FiArt12X
in
CLL Support
19 days ago
Continued Journey
Getting my forth chemo treatment today. This has been much easier than the O CHOP. It has been smooth sailing especially with the surgically implanted port.( I forgot to mention). I am starting to notice some fatigue and energy slow down which is quite natural. One more chemo treatment tomorrow then
Getting my forth chemo treatment today. This has been much easier than the O CHOP. It has been smooth sailing especially with the surgically implanted port.( I forgot to mention). I am starting to notice some fatigue and energy slow down which is quite natural. One more chemo treatment tomorrow then
FiArt12X
in
CLL Support
24 days ago
Myelofibrosis- GVHD graft, versus, host, disease.
Hi, thanks for accepting me onto your site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
Hi, thanks for accepting me onto your site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
FreemanSaviors
in
MPN Voice
26 days ago
Myelofibrosis - GVHD - graft, versus, host, disease
Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
FreemanSaviors
in
MPN Voice
26 days ago
STEM CELL TRANSPLANT FINALLY SCHEDULED (WE HOPE)
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
dwolden
in
CLL Support
28 days ago
Continued Journey
I will be starting the prep for my Bone Marrow Transplant (June 27) Friday. I have 5 days of chemo starting Friday this week, with a rest day before the BMT. Apprehension has been growing in me but it is balanced by others that have successfully made this journey. Also, my Drs. And team give an
I will be starting the prep for my Bone Marrow Transplant (June 27) Friday. I have 5 days of chemo starting Friday this week, with a rest day before the BMT. Apprehension has been growing in me but it is balanced by others that have successfully made this journey. Also, my Drs. And team give an
FiArt12X
in
CLL Support
29 days ago
SCT journey update No.3
Hi all, just to give you an update on my journey towards my *Allogenic Stem cell transplant, my transplant team @ Addenbrookes Hospital are working towards me starting chemotherapy at the end of July with the transplant taking place approx one week later at start of August. I have one more appointment
Hi all, just to give you an update on my journey towards my *Allogenic Stem cell transplant, my transplant team @ Addenbrookes Hospital are working towards me starting chemotherapy at the end of July with the transplant taking place approx one week later at start of August. I have one more appointment
LFCLove
in
MPN Voice
1 month ago
Borderline TSH during cancer treatment
Hi folks! Haven't been on here for some time but in the interim I have been treated for Chronic Myeloid Leukaemia. Had chemo in September last year which was successful (minus a few hiccups like fungal pneumonia that put me in ICU!) and currently on home oral chemo, antifungals and antibiotics daily
Hi folks! Haven't been on here for some time but in the interim I have been treated for Chronic Myeloid Leukaemia. Had chemo in September last year which was successful (minus a few hiccups like fungal pneumonia that put me in ICU!) and currently on home oral chemo, antifungals and antibiotics daily
spongecat
in
Thyroid UK
1 month ago
Success Story (so far, anyway)
I've had RLS for decades, starting in my 30s. Was on carb/levidopa for a while till it became no longer effective, then switched to Roprinirole, which worked just great, but had to keep upping the dosage to keep it's effectiveness. At 4MG of Roprinirole, I was running out of options, did some research
I've had RLS for decades, starting in my 30s. Was on carb/levidopa for a while till it became no longer effective, then switched to Roprinirole, which worked just great, but had to keep upping the dosage to keep it's effectiveness. At 4MG of Roprinirole, I was running out of options, did some research
buzzin247
in
Restless Legs Syndrome
7 months ago
Anyone’s thoughts on milk thistle?https://thyroidpatients.ca/2022/01/16/milk-thistle-thyroid-transport/amp/
I am on a hormone group someone has shared this I’ve been using milk thistle organic oil orally with vitamin e it doesn’t seem to have had any negative effects on myself thankyou in advance
I am on a hormone group someone has shared this I’ve been using milk thistle organic oil orally with vitamin e it doesn’t seem to have had any negative effects on myself thankyou in advance
Joannak
in
Thyroid UK
9 months ago
continuing the journey
I just had my 3rd round of Chemotherapy ( O CHOP). Doing pretty well, will see 2nd week is usually the hardest. My oncologist was very pleased with how I have responded (ei. Platelets 357 from 1st chemo 10).I also had a port put in my chest last week for easier access for infusion iOS and blood work.
I just had my 3rd round of Chemotherapy ( O CHOP). Doing pretty well, will see 2nd week is usually the hardest. My oncologist was very pleased with how I have responded (ei. Platelets 357 from 1st chemo 10).I also had a port put in my chest last week for easier access for infusion iOS and blood work.
FiArt12X
in
CLL Support
2 months ago
Sorry it has been a while with an update on Ruxolitinib
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
wendycu
in
MPN Voice
2 months ago
Quite the CLL journey
2012-2013 suspicion of CLL, enlarged lymph nodes in abdomen. Meet with oncologist, blood work does not reveal definitive diagnosis. Yearly appointments with blood work recommended 2016 enlarged lymph node removed from neck, biopsy confirmed CLL, watch and wait. 2018 escalating white blood count and
2012-2013 suspicion of CLL, enlarged lymph nodes in abdomen. Meet with oncologist, blood work does not reveal definitive diagnosis. Yearly appointments with blood work recommended 2016 enlarged lymph node removed from neck, biopsy confirmed CLL, watch and wait. 2018 escalating white blood count and
FiArt12X
in
CLL Support
2 months ago
One Small Setback...
I reported to the forum four plus weeks ago, the RLS symptoms had temporarily disappeared, due to extreme attention and focus on two tennis tournaments I conducted at our community. I began to taper down from 20 mg methadone to 7.5 mg today. The jerkiness I experienced in the past were absent, with
I reported to the forum four plus weeks ago, the RLS symptoms had temporarily disappeared, due to extreme attention and focus on two tennis tournaments I conducted at our community. I began to taper down from 20 mg methadone to 7.5 mg today. The jerkiness I experienced in the past were absent, with
vikkitennis
in
Restless Legs Syndrome
8 months ago
Japan and stem cells treatment
Hi there was a post last week about stem cell transplant in Japan. I thought I had saved it but obviously not! Does anyone have a link for it please?
Hi there was a post last week about stem cell transplant in Japan. I thought I had saved it but obviously not! Does anyone have a link for it please?
Bluebell2022
in
Cure Parkinson's
2 months ago
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