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Cutaneous T cell lymphoma (CTCL)
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Mylofibrosis
Hi everyone. Three weeks ago my husband diagnosed with mylofibrosis after PRV for six years. However his marrow sample was sent to another hospital for checking and we were told yesterday that the other hospital have said it is accellerated PRV so that is his diagnosis. We were told that he is in the
Hi everyone. Three weeks ago my husband diagnosed with mylofibrosis after PRV for six years. However his marrow sample was sent to another hospital for checking and we were told yesterday that the other hospital have said it is accellerated PRV so that is his diagnosis. We were told that he is in the
tissi
in
MPN Voice
12 years ago
He forgets and she reminds me
Bit of this Man in a bad mood hasn't brought the address or his phone and can only vaguely remember the instructions of how to get there. We start at the bottom of the dead end, where there is a young girl schooling a horse. And work our way up the lane. 2 men have no idea either but invite himself
Bit of this Man in a bad mood hasn't brought the address or his phone and can only vaguely remember the instructions of how to get there. We start at the bottom of the dead end, where there is a young girl schooling a horse. And work our way up the lane. 2 men have no idea either but invite himself
nedd
in
Pain Concern
12 years ago
Please help PMRGCAuk raise money for GCA research!
Hi. This forum is free, free, free and always will be. However, PMRGCAuk is run on a shoestring and our shoestring is wearing a bit thin! We desperately need money to help us continue our work. This month, Jennifer from the East Anglia support group and I are doing the Carrots Night Walk around
Hi. This forum is free, free, free and always will be. However, PMRGCAuk is run on a shoestring and our shoestring is wearing a bit thin! We desperately need money to help us continue our work. This month, Jennifer from the East Anglia support group and I are doing the Carrots Night Walk around
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
12 years ago
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has anyone had lumps in neck , swollen lymph nodes that dont hurt and if so was it lupus or lymphoma.
AlisonE
in
LUPUS UK
12 years ago
My first attempt at baking gluten free bread in a machine - help needed pls!
I have been cooking gluten free, dairy free food for over a year now but never had the nerve to try and make my own bread. Until now. My mother in law has a bread machine and offered to lend it to me, as we have all had problems getting hold of the 'nice' Genius bread in the supermarkets of late. We
I have been cooking gluten free, dairy free food for over a year now but never had the nerve to try and make my own bread. Until now. My mother in law has a bread machine and offered to lend it to me, as we have all had problems getting hold of the 'nice' Genius bread in the supermarkets of late. We
Feedingmyintolerantchild
in
Gluten Free Guerrillas
12 years ago
Extreme tiredness, low ferritin - both myself and daughter
Well I could not believe it when the hospital in London said that both of our levels are very low hence why I fall asleep so suddenly and my daughter saying how extremely tired she is put it down to A levels but they said low ferritin. Looking at our results it says about low Haemcrit, high red cell
Well I could not believe it when the hospital in London said that both of our levels are very low hence why I fall asleep so suddenly and my daughter saying how extremely tired she is put it down to A levels but they said low ferritin. Looking at our results it says about low Haemcrit, high red cell
daisy11
in
Hughes Syndrome APS Forum
12 years ago
MF BMT (SCT) Transplant Survivor
Hi, I was diagnosed with MF in 2010 and had a Stem Cell Transplant in March 2011, I live just outside London. I do buddying for MPDVoice and have just taken one buddy through transplant and have two more heading that way. Thanks to the internet I have MF-BMT friends around the globe at varying stages
Hi, I was diagnosed with MF in 2010 and had a Stem Cell Transplant in March 2011, I live just outside London. I do buddying for MPDVoice and have just taken one buddy through transplant and have two more heading that way. Thanks to the internet I have MF-BMT friends around the globe at varying stages
MFBMT2011
in
MPN Voice
12 years ago
GF DF Meatloaf recipe – cheap, quick to prepare and so easy!!!
A while ago, I posted a blog about revisiting some classic 1970’s recipes for some inspiration. http://feedingmyintolerantchild.com/2012/05/16/a-cook-back-in-time/ It was because I feel that home cooking was a lot more simple back then and a lot of the recipes in my Mum’s old cookbooks were real
A while ago, I posted a blog about revisiting some classic 1970’s recipes for some inspiration. http://feedingmyintolerantchild.com/2012/05/16/a-cook-back-in-time/ It was because I feel that home cooking was a lot more simple back then and a lot of the recipes in my Mum’s old cookbooks were real
Feedingmyintolerantchild
in
Gluten Free Guerrillas
12 years ago
The Gift of Inspiration
Sickle Cell Anaemia is one aspect of our lives that often shrouds the rest of who we are. Identity is made up of several factors, of which sickle cell is only one. Developing the other aspects of our identity, taking the focus away from how we are crippled by the debilitating effects of Sickle Cell
Sickle Cell Anaemia is one aspect of our lives that often shrouds the rest of who we are. Identity is made up of several factors, of which sickle cell is only one. Developing the other aspects of our identity, taking the focus away from how we are crippled by the debilitating effects of Sickle Cell
Alisonsellers
in
Sickle Cell Society
12 years ago
Help Dealing with Sickle Cell Anemia
Hello everyone, I have had sickle cell anemia my entire life. I used to go the hospital very often, but now I only go about twice a year to be admitted. I have; through research, asking around and other such things; found different ways to deal with the pain of my disease. To avoid pain: Wrap
Hello everyone, I have had sickle cell anemia my entire life. I used to go the hospital very often, but now I only go about twice a year to be admitted. I have; through research, asking around and other such things; found different ways to deal with the pain of my disease. To avoid pain: Wrap
Anzy
in
Sickle Cell Society
12 years ago
What an amazing week!
Well, on top of the article in the Daily Mail that has caused our phones to practically melt (140 calls since Tuesday), we have got even more excitement to report. Lord Wills, who has taken up the cause of Giant Cell Arteritis and the tragedy of sight loss that it can cause, has managed to get the
Well, on top of the article in the Daily Mail that has caused our phones to practically melt (140 calls since Tuesday), we have got even more excitement to report. Lord Wills, who has taken up the cause of Giant Cell Arteritis and the tragedy of sight loss that it can cause, has managed to get the
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
12 years ago
Daily Mail features Giant Cell Arteritis
Now, the Daily Mail isn't normally my favourite newspaper, but today it definitely is. The Mail has published a long and really good feature on Giant Cell Arteritis, the tragedy of people who lose their sight because of it not being diagnosed, and the scandal of doctors who don't see what is right in
Now, the Daily Mail isn't normally my favourite newspaper, but today it definitely is. The Mail has published a long and really good feature on Giant Cell Arteritis, the tragedy of people who lose their sight because of it not being diagnosed, and the scandal of doctors who don't see what is right in
Polywotsit
PMRGCAuk team member
in
PMRGCAuk
12 years ago
AMN/Mystery disease
I am computer challenged! I am like a cave woman in training in this computer/technological world! FYI, I have, never, ever done a blog, before! I am suffering from AMN, big time, and would love some help!!! I KNOW THAT I COULD BE OF HELP AND YOU COULD BE OF HELP TO ME! I have an amazing story
I am computer challenged! I am like a cave woman in training in this computer/technological world! FYI, I have, never, ever done a blog, before! I am suffering from AMN, big time, and would love some help!!! I KNOW THAT I COULD BE OF HELP AND YOU COULD BE OF HELP TO ME! I have an amazing story
relay
in
AMN EASIER
12 years ago
Update on ice cream cones – very disappointed with Sainsbury’s
If you have been following my recent blog posts, you will know that I have been searching for the Barkat gluten free, dairy free ice cream cones. I approached the Barkat stand at the Allergy Show several weeks ago and they assured me they would be back on the shelves in Sainsbury’s very soon. I have
If you have been following my recent blog posts, you will know that I have been searching for the Barkat gluten free, dairy free ice cream cones. I approached the Barkat stand at the Allergy Show several weeks ago and they assured me they would be back on the shelves in Sainsbury’s very soon. I have
Feedingmyintolerantchild
in
Gluten Free Guerrillas
12 years ago
I NEED HELP
It was a surprise to know that 15,000 babies are born yearly in ghana with sickle cell disease and 45,000 in Africa as a whole. Sickle cell disease cant be cured but can by avoided. This is when a person gets to know his or her status and choose the right partner. Here in Ghana, people dont check for
It was a surprise to know that 15,000 babies are born yearly in ghana with sickle cell disease and 45,000 in Africa as a whole. Sickle cell disease cant be cured but can by avoided. This is when a person gets to know his or her status and choose the right partner. Here in Ghana, people dont check for
quasi
in
Sickle Cell Society
12 years ago
A great source of information on treatment of Sickle Cell in the UK
Many of you are probably aware of NHS Choices as resource for information about Sickle Cell Disorders, but if you aren’t you can find a basic overview here: http://www.nhs.uk/Conditions/Sickle-cell-anaemia/Pages/Introduction.aspx . It provides an overview of the disorders, as well as going more in depth
Many of you are probably aware of NHS Choices as resource for information about Sickle Cell Disorders, but if you aren’t you can find a basic overview here: http://www.nhs.uk/Conditions/Sickle-cell-anaemia/Pages/Introduction.aspx . It provides an overview of the disorders, as well as going more in depth
CarlottaO
Sickle Cell Society
in
Sickle Cell Society
12 years ago
Crisis but only sickle cell trait?
I am a 44 year old lady and have been told iam sickle cell trait for many years now. what i need to know is could i still get a crisis as i ended up in hospital recently with stomach pain and ended up having my appendix taken out. However when this was done they were perfectly normal. I have had various
I am a 44 year old lady and have been told iam sickle cell trait for many years now. what i need to know is could i still get a crisis as i ended up in hospital recently with stomach pain and ended up having my appendix taken out. However when this was done they were perfectly normal. I have had various
karengr1
in
Sickle Cell Society
12 years ago
Goodnight all - catch up with you tomorrow
Hi all and a goodnight to you all. That's my lot for the night. Hi ho hi ho and off to bed I go, with a yawn yawn here and a yawn yawn there Hi ho hi ho zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz Sleeeeeeeeeeeeep tight and don't let the bed bugs bite. Love and hugs Chris xx
Hi all and a goodnight to you all. That's my lot for the night. Hi ho hi ho and off to bed I go, with a yawn yawn here and a yawn yawn there Hi ho hi ho zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz Sleeeeeeeeeeeeep tight and don't let the bed bugs bite. Love and hugs Chris xx
Hidden
in
Fibromyalgia Action UK
12 years ago
GINGER CAKE ALERT !!!!
Ok everybody i know you are all on the edge of your seat waiting for my next phase of thing s to eat well i can announce that i have bben to asda and purchased a Mcvities jamacian ginger cake and also a golden syrup cake and i thought i would be healthy and instead of fresh cream i bought a pot of creme
Ok everybody i know you are all on the edge of your seat waiting for my next phase of thing s to eat well i can announce that i have bben to asda and purchased a Mcvities jamacian ginger cake and also a golden syrup cake and i thought i would be healthy and instead of fresh cream i bought a pot of creme
Hidden
in
Fibromyalgia Action UK
12 years ago
Legs seized up
Hi i have just had a really scary experience, i was walking up stairs and both legs seized up, like cramp but much worse. I felt i had no control over them, i couldnt move. I have had leg cramps before but never anything like this. The reason i found it so upsetting is I wondered what i would have done
Hi i have just had a really scary experience, i was walking up stairs and both legs seized up, like cramp but much worse. I felt i had no control over them, i couldnt move. I have had leg cramps before but never anything like this. The reason i found it so upsetting is I wondered what i would have done
tmoxon
in
Gluten Free Guerrillas
12 years ago
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