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Cutaneous T cell lymphoma (CTCL)
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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
Non Hodgkin Lymphoma and Cll
JERRY was diagnosed with CLL CLA about 3 years ago. On Imbruvica for 7 mos. Dr filling in for orig cancer dr ordered another pet scan showing diagnosis as N-Hodgkin lymphoma on the order sheet??? anyone ever hear of this? thanks Deb
JERRY was diagnosed with CLL CLA about 3 years ago. On Imbruvica for 7 mos. Dr filling in for orig cancer dr ordered another pet scan showing diagnosis as N-Hodgkin lymphoma on the order sheet??? anyone ever hear of this? thanks Deb
deb1610
in
CLL Support
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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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
Update on the breast screening
Hi all Its me again! So today was my appointment for the screening. I went with my mum, because we thought it will be very quick. I got called by the nurse and she checked and found two lumps (on my left breast) and marked it l , she said i needed a scan. I went back to the waiting room and after awhile
Hi all Its me again! So today was my appointment for the screening. I went with my mum, because we thought it will be very quick. I got called by the nurse and she checked and found two lumps (on my left breast) and marked it l , she said i needed a scan. I went back to the waiting room and after awhile
ijeasike
in
LUPUS UK
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
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
Friends and Fans from around the World
I Thank all those for the messages of support at times they can make a huge difference. I am back home now just been watching the highlights of the Final day of the Tour I was there but you can't see everything hey. I had a great time and meet some lovely people, our group had no punctures like all the
I Thank all those for the messages of support at times they can make a huge difference. I am back home now just been watching the highlights of the Final day of the Tour I was there but you can't see everything hey. I had a great time and meet some lovely people, our group had no punctures like all the
TheFlyer
in
CLL Support
7 years ago
Chromophobe renal cell carcinoma treatment
Hi all, My uncle is diagnosed with chromophobe renal cell carcinoma and it has metastasized. He did not have any other health problems earlier. Please suggest the best treatment option, doctor and hospital Thanks,
Hi all, My uncle is diagnosed with chromophobe renal cell carcinoma and it has metastasized. He did not have any other health problems earlier. Please suggest the best treatment option, doctor and hospital Thanks,
nandakishore
in
Cancer Patients Aid Association India
7 years ago
Treatment for Renal Cell Carcinoma
My uncle has recently been diagnosed with Chromophobe Renal Cell Carcinoma. Initially in the biopsy it came as Angiosarcome and then by re-biopsy and IHC it's been confirmed as Chromophobe Renal Cell Carcinoma. Hence it has metasized any effective treatment available? Doctor suggested sutent drug.
My uncle has recently been diagnosed with Chromophobe Renal Cell Carcinoma. Initially in the biopsy it came as Angiosarcome and then by re-biopsy and IHC it's been confirmed as Chromophobe Renal Cell Carcinoma. Hence it has metasized any effective treatment available? Doctor suggested sutent drug.
nandakishore
in
Cancer Patients Aid Association India
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
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
Stem Cell Transplant Research
Trying to find a way to eliminate the need for bone marrow donors ... http://tinyurl.com/y8rm9p6u
Trying to find a way to eliminate the need for bone marrow donors ... http://tinyurl.com/y8rm9p6u
Shar0n
Volunteer
in
Non Hodgkin's Lymphoma Friends
7 years ago
Donor identified
It's been a while since my last update but I'm pleased to say that I have a donor lined up for a stem cell transplant. A young man from Germany. I am to stay on Ibruitinin for 6 more months and then good to go.
It's been a while since my last update but I'm pleased to say that I have a donor lined up for a stem cell transplant. A young man from Germany. I am to stay on Ibruitinin for 6 more months and then good to go.
KAS8
in
CLL Support
7 years ago
For those diagnosed with Giant Cell Arteritis - this was tweeted just a few minutes ago
A breakthrough in the treatment of GCA @RheumatologyUK @PMRGCAuk @vascuk Please follow this link https://www.ncbi.nlm.nih.gov/pubmed/28745999
A breakthrough in the treatment of GCA @RheumatologyUK @PMRGCAuk @vascuk Please follow this link https://www.ncbi.nlm.nih.gov/pubmed/28745999
Suzym2u
Vasculitis UK
in
Vasculitis UK
7 years ago
Looking for advice.
Hi. I've just joined this site for two reasons. My daughter has Graves disease. I have primary hyperparathyroidism with possible 4 gland hyperplasia. I had a parathyroidectomy 5 weeks ago with half my thyroid removed during the operation. My daughters blood results are good at the moment but she is only
Hi. I've just joined this site for two reasons. My daughter has Graves disease. I have primary hyperparathyroidism with possible 4 gland hyperplasia. I had a parathyroidectomy 5 weeks ago with half my thyroid removed during the operation. My daughters blood results are good at the moment but she is only
hollyhobbi
in
Thyroid UK
7 years ago
Being a sickle cell
I never knew I was had the SCT trait until I was 15years. I always had pain and fell sick easily with malaria and a times typhoid. And even d sickle cell crisis . It's not easy to be a carrier of this trait but with good diet, medication and love from families and friends, I bliv all is well.
I never knew I was had the SCT trait until I was 15years. I always had pain and fell sick easily with malaria and a times typhoid. And even d sickle cell crisis . It's not easy to be a carrier of this trait but with good diet, medication and love from families and friends, I bliv all is well.
dinah9927
in
Sickle Cell Society
7 years ago
Phenomenal News
Some of you may have seen my recent post inquiring about full remission. The reason is that I have been in full remission since June 2nd without any of my prior symptoms. I have not had one moment of cog fog, muscle spasm, fatigue, numbness, or loss of balance. I have not: changed my diet, changed my
Some of you may have seen my recent post inquiring about full remission. The reason is that I have been in full remission since June 2nd without any of my prior symptoms. I have not had one moment of cog fog, muscle spasm, fatigue, numbness, or loss of balance. I have not: changed my diet, changed my
Karen-x
in
My MSAA Community
7 years ago
Test results
I got my test results back from the CAT scans. I have an enlarged liver, spleen, and borderline heart. Multiple lymph nodes lumps. My white blood cell count is around 19,000, he's sending me to a hematologist. So I still don't know if I have non Hodgkin's lymphoma. What do y'all think? Thank you, so
I got my test results back from the CAT scans. I have an enlarged liver, spleen, and borderline heart. Multiple lymph nodes lumps. My white blood cell count is around 19,000, he's sending me to a hematologist. So I still don't know if I have non Hodgkin's lymphoma. What do y'all think? Thank you, so
Gailbarnes
in
Non Hodgkin's Lymphoma Friends
7 years ago
It's a Nice Day for a White Wedding
Hi Folks , , just a social post to prove that despite my current issues battling my inner GVHD 'friend', there is life after undergoing a Stem cell transplant. My beautiful wife and I attended a Nieces wedding this weekend. It was a casual event as weddings go and very enjoyable. I was keeping everything
Hi Folks , , just a social post to prove that despite my current issues battling my inner GVHD 'friend', there is life after undergoing a Stem cell transplant. My beautiful wife and I attended a Nieces wedding this weekend. It was a casual event as weddings go and very enjoyable. I was keeping everything
JediReject
in
MPN Voice
7 years ago
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