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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
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
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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 Support
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 Support
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
Giant Cell Arteritis and Tocilizumab Patient Experience Needed
If you have been treated with Tocilizumab for Giant Cell Arteritis VUK would like to hear of your experiences both good and bad. Please contact John Mills email John.mills@vasculitis.org.uk as soon as possible
If you have been treated with Tocilizumab for Giant Cell Arteritis VUK would like to hear of your experiences both good and bad. Please contact John Mills email John.mills@vasculitis.org.uk as soon as possible
Suzym2u
Vasculitis UK
in
Vasculitis UK
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
18 year old Son Diagnosed with ALD
My son was just recently diagnosed with ALD and will be getting a Bone Marrow transplant soon. We are all very scared and lost right now and if you have any advice we would love to hear it.
My son was just recently diagnosed with ALD and will be getting a Bone Marrow transplant soon. We are all very scared and lost right now and if you have any advice we would love to hear it.
ballml
in
Leukodystrophy Support
7 years ago
Sickle Cell Trait
Hi Im 21 years old and have been diagnosed with Sickle Cell Trait when i was seven, I have been experiencing some dizziness a couple days now which is very uncomfortable. It feels as if i am very intoxicated, moving my head and neck in certain directions is extremely discomforting as it feels like if
Hi Im 21 years old and have been diagnosed with Sickle Cell Trait when i was seven, I have been experiencing some dizziness a couple days now which is very uncomfortable. It feels as if i am very intoxicated, moving my head and neck in certain directions is extremely discomforting as it feels like if
Miguelf
in
Sickle Cell Society
7 years ago
Hi I'm new to this group low vitamin B9 folate
Hi I'm new to this group I have slightly low vitamin B9 folate I'm told I was looking it up and this group came up. Can anyone tell me what this means as I have long term health problems too many to mention, I suffer with lots of muscle joint pain and fatigue recently suffered a bout of moderate gastritis
Hi I'm new to this group I have slightly low vitamin B9 folate I'm told I was looking it up and this group came up. Can anyone tell me what this means as I have long term health problems too many to mention, I suffer with lots of muscle joint pain and fatigue recently suffered a bout of moderate gastritis
GillyGangGong
in
Pernicious Anaemia Society
7 years ago
Just the facts / In Summer Heat Stay Hydrated - Please
FACT about sickle cell trait "The defect in urine concentrating ability in persons with sickle cell trait is thought to result from intracellular polymerization of Hb S in erythrocytes, leading to microvascular occlusion, in the vasa recta of the renal medulla. Reasoning that the severity of the concentration
FACT about sickle cell trait "The defect in urine concentrating ability in persons with sickle cell trait is thought to result from intracellular polymerization of Hb S in erythrocytes, leading to microvascular occlusion, in the vasa recta of the renal medulla. Reasoning that the severity of the concentration
RadiantSue
in
Sickle Cell Society
7 years ago
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