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discovering your own sickle cell as it is not anyone else's
I have had sickle cell all my life 45 years but only did I discover it in the last few years mainly just an ache in the lower region and then later when I was doing boot camp exercises. I had been seeing a physio for 2 years and always monthly I had my lower section re-adjusted but then it moved to upper
I have had sickle cell all my life 45 years but only did I discover it in the last few years mainly just an ache in the lower region and then later when I was doing boot camp exercises. I had been seeing a physio for 2 years and always monthly I had my lower section re-adjusted but then it moved to upper
kilincli
in
Sickle Cell Society
7 years ago
surgery
I have sickle cell anemia homozygous and it is killing me I wish to undergo a bone marrow transplant surgery but as you my know it very expensive thus I am writing to ask is there an organizations that would fund my surgery . please enlighten me .
I have sickle cell anemia homozygous and it is killing me I wish to undergo a bone marrow transplant surgery but as you my know it very expensive thus I am writing to ask is there an organizations that would fund my surgery . please enlighten me .
Hidden
in
Sickle Cell Society
7 years ago
Update to Specialist 1st visit
Hi everyone, Thank you for the support and information shared to my original post. As promised, I’m sharing what was explained to me by my referring hematologist regarding the letter sent her by the specialist. This is my experience and I want to be careful to not alarm any other forum members. This
Hi everyone, Thank you for the support and information shared to my original post. As promised, I’m sharing what was explained to me by my referring hematologist regarding the letter sent her by the specialist. This is my experience and I want to be careful to not alarm any other forum members. This
Cmg5935
in
MPN Voice
7 years ago
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Myleofibrosis and acute myeloid leukaemia
I am 47 and have no family able to give me bone marrow for a transplant, has anybody got any advice about treatmen or even prognosis. All I can find on the net is your gonna die, so am desperate for some proper sensible advice. I was only told 3 days ago, but told I would need 2 weeks of chemo and a
I am 47 and have no family able to give me bone marrow for a transplant, has anybody got any advice about treatmen or even prognosis. All I can find on the net is your gonna die, so am desperate for some proper sensible advice. I was only told 3 days ago, but told I would need 2 weeks of chemo and a
Paul278mc
in
MPN Voice
7 years ago
Sickle Cell Trait
I have just been diagnosed with Sickle Cell Trait.Either trait can have the same symptoms of the disease or I have full blown sickle cell anemia.Both sides of my family have Southern European ancestry. Detached retinas run in my dads side.I have week retinas with holes.I have been anemic and had severe
I have just been diagnosed with Sickle Cell Trait.Either trait can have the same symptoms of the disease or I have full blown sickle cell anemia.Both sides of my family have Southern European ancestry. Detached retinas run in my dads side.I have week retinas with holes.I have been anemic and had severe
Kimr4
in
Sickle Cell Society
7 years ago
Ibrutinib doing its job well
It's been a couple of months since I last posted and all is going well. WBC is coming down nicely and platelets, haemoglobin etc all in the healthy range. Joint pain is less often and I know that it will pass within a couple of days. Picking up on my exercise walking a local reservoir at pace (7.5k
It's been a couple of months since I last posted and all is going well. WBC is coming down nicely and platelets, haemoglobin etc all in the healthy range. Joint pain is less often and I know that it will pass within a couple of days. Picking up on my exercise walking a local reservoir at pace (7.5k
KAS8
in
CLL Support
7 years ago
Thyroxine and ageing
Does our
ageing
bodies not metabolise it so
well
?? I posted a few weeks back regarding the possibility of the switch to Teva from Almas could have upset me and still haven’t ruled this out.
Does our
ageing
bodies not metabolise it so
well
?? I posted a few weeks back regarding the possibility of the switch to Teva from Almas could have upset me and still haven’t ruled this out.
Citta
in
Thyroid UK
7 years ago
Is my sickle cell acting up again?
I am 16 and have been diagnosed with sickle cell traits at child birth already, I was born three months early and have had trouble with breathing. I had my first crisis at the age of 1 and another at 7 I haven't been experiencing that many problems but I am an athlete and recovering hurts a lot but lately
I am 16 and have been diagnosed with sickle cell traits at child birth already, I was born three months early and have had trouble with breathing. I had my first crisis at the age of 1 and another at 7 I haven't been experiencing that many problems but I am an athlete and recovering hurts a lot but lately
NisaInnit
in
Sickle Cell Society
7 years ago
Stem cell treatment
Hi all just had a quick question if anyone has had a stem cell transplant ( I think that's what it's called) have you had any success what was ur experience?? Any information would really be appreciated Thank you all
Hi all just had a quick question if anyone has had a stem cell transplant ( I think that's what it's called) have you had any success what was ur experience?? Any information would really be appreciated Thank you all
Kc_1411
in
Scleroderma & Raynaud's UK (SRUK)
7 years ago
Too much Methylcobalamine?
I took methylcobalamine 5000 mcg sublingual for about 10 months. Just had my blood tested and found the B-12 level was > 1999 and the normal range is 211-946. Doc said to stop taking methylcobalamine immediately. Stopped 3 weeks ago . I have tingling on both feet. Should I gradually withdraw rather
I took methylcobalamine 5000 mcg sublingual for about 10 months. Just had my blood tested and found the B-12 level was > 1999 and the normal range is 211-946. Doc said to stop taking methylcobalamine immediately. Stopped 3 weeks ago . I have tingling on both feet. Should I gradually withdraw rather
Donhturner
in
Pernicious Anaemia Society
7 years ago
Stem cell transplant research
Eliminating the need for bone marrow donors http://tinyurl.com/yc3vb5d4
Eliminating the need for bone marrow donors http://tinyurl.com/yc3vb5d4
Shar0n
Volunteer
in
Non Hodgkin's Lymphoma Friends
7 years ago
Really feel confused
I'm new on this forum I just don't know what to ask now !! This sickle cell trait I've got I have been suffering for quite a long time now some days I get my crisis the pains in my stomach legs feel weird but my GP don't listen she thinks I'm mad or on drink or even drugs !!!!!! So where do I get some
I'm new on this forum I just don't know what to ask now !! This sickle cell trait I've got I have been suffering for quite a long time now some days I get my crisis the pains in my stomach legs feel weird but my GP don't listen she thinks I'm mad or on drink or even drugs !!!!!! So where do I get some
Healthbud
in
Sickle Cell Society
7 years ago
Come along to our Young people versus blood cancer day on the 23rd September 2017 in London , book your free place now.
Free place , register now , this day is for nurses in the morning but also patients and carers in the afternoon . Lots of talks on fertility , getting back to work, stem cell transplantation and much more. http://www.leukaemiacare.org.uk/patient-and-carer-conferences
Free place , register now , this day is for nurses in the morning but also patients and carers in the afternoon . Lots of talks on fertility , getting back to work, stem cell transplantation and much more. http://www.leukaemiacare.org.uk/patient-and-carer-conferences
Esther07
in
Leukaemia CARE
7 years ago
GP didn't order intrinsic factor test!
Hello, I went to my GP practice and got print-outs of all my blood test results, but discovered I never even had the IF test! Instead she did the gastric parietal cell antibody test (negative) as well as a number of others (all negative): Anti Mitochondrial Antibody Anti Smooth Muscle Antibody Liver
Hello, I went to my GP practice and got print-outs of all my blood test results, but discovered I never even had the IF test! Instead she did the gastric parietal cell antibody test (negative) as well as a number of others (all negative): Anti Mitochondrial Antibody Anti Smooth Muscle Antibody Liver
Curlygal
in
Pernicious Anaemia Society
7 years ago
GCA and Tocilizumab
I have just heard that I have funding and approval from the NHS to take Tocilizumab and will be having my first infusion this week or the week after. Then I have weekly injections after. I wondered if anyone knew if there are any immediate effects. Also do you go on taking other medications. I am on
I have just heard that I have funding and approval from the NHS to take Tocilizumab and will be having my first infusion this week or the week after. Then I have weekly injections after. I wondered if anyone knew if there are any immediate effects. Also do you go on taking other medications. I am on
christine2715
in
PMRGCAuk
7 years ago
*FREE INFORMATION DAY*Come along to our Young People Versus Blood Cancer Day Trekstock & Leukaemia CARE
Book your free place today , the afternoon session is for patients and carers and hosted jointly by Trekstok & Leukaemia CARE in London on the 23rd September. https://www.eventbrite.co.uk/e/young-people-against-blood-cancer-information-day-tickets-32880028049?aff=WebsiteText Talks on fertility, stem
Book your free place today , the afternoon session is for patients and carers and hosted jointly by Trekstok & Leukaemia CARE in London on the 23rd September. https://www.eventbrite.co.uk/e/young-people-against-blood-cancer-information-day-tickets-32880028049?aff=WebsiteText Talks on fertility, stem
Esther07
in
Leukaemia CARE
7 years ago
IF Antibody test back - so what next
Following up on my previous posts (low B12, started on B12 loading shots - had second today so too early to tell results on symptoms) Finally got my IF antibody test back today Results: 2.9 U/mL (Normal: < 6 U/mL) I'm aware of the inherent reliability of the test (40-60%) so realise that it doesn't
Following up on my previous posts (low B12, started on B12 loading shots - had second today so too early to tell results on symptoms) Finally got my IF antibody test back today Results: 2.9 U/mL (Normal: < 6 U/mL) I'm aware of the inherent reliability of the test (40-60%) so realise that it doesn't
GavinUK
in
Pernicious Anaemia Society
7 years ago
JUST THE FACTS: SCT/Sickle Cell Trait ==> "People with Diabetes and Sickle Cell Trait Should Have Reliable A1C Test"
Source: NIH (National Institutes of Health) Web site https://www.nih.gov/news-events/news-releases/people-diabetes-sickle-cell-trait-should-have-reliable-a1c-test) Wednesday, November 28, 2007 ARTICLE TITLE: "People with Diabetes and Sickle Cell Trait Should Have Reliable A1C Test" QUOTE #1: ""In the
Source: NIH (National Institutes of Health) Web site https://www.nih.gov/news-events/news-releases/people-diabetes-sickle-cell-trait-should-have-reliable-a1c-test) Wednesday, November 28, 2007 ARTICLE TITLE: "People with Diabetes and Sickle Cell Trait Should Have Reliable A1C Test" QUOTE #1: ""In the
RadiantSue
in
Sickle Cell Society
7 years ago
STIFF PERSON SYNDROME( a rare disease where your muscles go stiff, with ongoing spasms in any and all muscles) GAD65
I was diagnosed with SPS in 2013, although at that stage my neurologist was of the opinion that I had the syndrome for at least 5 years before being diagnosed. I am on high dosages of mood depressants, morphine etc . Not many has this disease, and I have been trying to get into a clinical trial for stem
I was diagnosed with SPS in 2013, although at that stage my neurologist was of the opinion that I had the syndrome for at least 5 years before being diagnosed. I am on high dosages of mood depressants, morphine etc . Not many has this disease, and I have been trying to get into a clinical trial for stem
carin02011966
in
Lung Conditions Community Forum
7 years ago
Is this the right test?
I've been diagnosed with B12 (113) and folate (3.1) deficiency. I'm getting the loading injections at the moment. The doctor has given me a blood test form to get a "gastic parietal cell antibody" test. Is this the right test? I thought I should be getting the Anti intrinsic factor antibody test as that
I've been diagnosed with B12 (113) and folate (3.1) deficiency. I'm getting the loading injections at the moment. The doctor has given me a blood test form to get a "gastic parietal cell antibody" test. Is this the right test? I thought I should be getting the Anti intrinsic factor antibody test as that
Orpheusss
in
Pernicious Anaemia Society
7 years ago
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