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Northern Ireland Lupus Group and LUPUS UK Virtual Volunteering Event - 26th June 7pm!
Do you live in Northern Ireland and want to get involved in volunteering? The Northern Ireland Lupus Group and LUPUS UK National Office are hosting an online volunteer information event on Wednesday 26th June, from 7pm until 9pm. This is a brilliant opportunity to learn about the charity and the many
Do you live in Northern Ireland and want to get involved in volunteering? The Northern Ireland Lupus Group and LUPUS UK National Office are hosting an online volunteer information event on Wednesday 26th June, from 7pm until 9pm. This is a brilliant opportunity to learn about the charity and the many
michaellasmith
Administrator
in
LUPUS UK
23 days ago
Investigational MS Med Nearly Eliminates Disease Activity on MRI
NASHVILLE, TENNESSEE — A second-generation anti-CD40L monoclonal antibody suppresses multiple sclerosis (MS) disease activity on MRI to an uncommonly high degree, new trial data suggested.
https://www.mdedge.com/neurology/article/269463/multiple-sclerosis/investigational-ms-med-nearly-eliminates-disease
NASHVILLE, TENNESSEE — A second-generation anti-CD40L monoclonal antibody suppresses multiple sclerosis (MS) disease activity on MRI to an uncommonly high degree, new trial data suggested.
https://www.mdedge.com/neurology/article/269463/multiple-sclerosis/investigational-ms-med-nearly-eliminates-disease
BettysMom
in
My MSAA Community
23 days ago
Indapamide & Potassium
Hi guys, i had a blood test on Monday as doctor wanted to test U&Es. Was born with one kidney & have high blood pressure also underactive thyroid Serum sodium level 135 mmol/L [133.0 - 146.0] Serum potassium level 3.5 mmol/L [3.5 - 5.3] Serum urea level 3.2 mmol/L [2.5 - 7.8] Serum creatinine level 74
Hi guys, i had a blood test on Monday as doctor wanted to test U&Es. Was born with one kidney & have high blood pressure also underactive thyroid Serum sodium level 135 mmol/L [133.0 - 146.0] Serum potassium level 3.5 mmol/L [3.5 - 5.3] Serum urea level 3.2 mmol/L [2.5 - 7.8] Serum creatinine level 74
yewotc23
in
Thyroid UK
24 days ago
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still anxious about pancreatic cancer
hey, so I've been told I have Gilbert syndrome as although my bloods have shown elevated bilirubin (23 u/mol and then 2nd blood test 32 u/mol) my liver function is fine, I have also had a clear ultrasound. have been having middle to upper back ache on and off for months and I'm now worried again that
hey, so I've been told I have Gilbert syndrome as although my bloods have shown elevated bilirubin (23 u/mol and then 2nd blood test 32 u/mol) my liver function is fine, I have also had a clear ultrasound. have been having middle to upper back ache on and off for months and I'm now worried again that
Megaaalee
in
British Liver Trust
24 days ago
self-inject intramuscular vitamin B12
Hi all,I often read these posts but not very often write in. I was diagnosed with PA in 2000 using the schillings test. I have been having IM injections every 3 months ever since. However since COVID I have been self injecting. My surgery does not really support that, so I just buy supplies from Germany
Hi all,I often read these posts but not very often write in. I was diagnosed with PA in 2000 using the schillings test. I have been having IM injections every 3 months ever since. However since COVID I have been self injecting. My surgery does not really support that, so I just buy supplies from Germany
Tonyworks
in
Pernicious Anaemia Society
25 days ago
B12 deficiency and night sweats query
Hi - I don't have a diagnosis but I hope you don't mind if I pick your expert brains 🙏 I (Female, 45) have fairly regular blood tests due to medication I take for inflammatory arthritis. My MCV has been a little bit high for years (up to 102). Early on doctors would question it and because of a family
Hi - I don't have a diagnosis but I hope you don't mind if I pick your expert brains 🙏 I (Female, 45) have fairly regular blood tests due to medication I take for inflammatory arthritis. My MCV has been a little bit high for years (up to 102). Early on doctors would question it and because of a family
rmros
in
Pernicious Anaemia Society
25 days ago
IVF - After a Miscarriage
Hi All I’ve had SLE since 2014, and I had a miscarriage in my first trimester in Jan 24. Since, I’ve been referred for IVF and in parallel I am trying to get a referral to a Lupus In Pregnancy clinic so both the fertility and lupus clinic that specialises in pregnancy can help build a plan for me.
Hi All I’ve had SLE since 2014, and I had a miscarriage in my first trimester in Jan 24. Since, I’ve been referred for IVF and in parallel I am trying to get a referral to a Lupus In Pregnancy clinic so both the fertility and lupus clinic that specialises in pregnancy can help build a plan for me.
Heal-
in
LUPUS UK
25 days ago
autoimmune left or right bias?
Adult Onset Stills Disease is categorised as autoimmune /auto inflammatory. Over the years I’ve developed several other AI conditions such as Interstitial Cystitis and Lichen Sclerous. I have fungal nail disease on my left foot, gout in left toe, finger warts on my left hand, over growth of soft gum
Adult Onset Stills Disease is categorised as autoimmune /auto inflammatory. Over the years I’ve developed several other AI conditions such as Interstitial Cystitis and Lichen Sclerous. I have fungal nail disease on my left foot, gout in left toe, finger warts on my left hand, over growth of soft gum
Stills
in
PMRGCAuk
25 days ago
Can you live longer than 20 years with cirrhosis
18 years ago I was very ill with Hepatises/cirrhosis. Since then I have done ok. I have portal hypertension but no varices. Occasion fluid retention in my legs but no ascites. Enlarged spleen 17mm. I have been asking the doctors if I can live past 20 years with this disease. The responsive have been
18 years ago I was very ill with Hepatises/cirrhosis. Since then I have done ok. I have portal hypertension but no varices. Occasion fluid retention in my legs but no ascites. Enlarged spleen 17mm. I have been asking the doctors if I can live past 20 years with this disease. The responsive have been
1of5
in
British Liver Trust
6 months ago
My journey thus far
I am currently at the point of deciding on treatment for my high risk prostate cancer. Here is where things stand thus far:
October 2023:
PSA of 22 discovered at routine physical
November 2023:
PSA score of 25.6 upon retest by urologist
December 2023:
TRUS Biopsy. Cancer in
I am currently at the point of deciding on treatment for my high risk prostate cancer. Here is where things stand thus far:
October 2023:
PSA of 22 discovered at routine physical
November 2023:
PSA score of 25.6 upon retest by urologist
December 2023:
TRUS Biopsy. Cancer in
CavScout
in
Advanced Prostate Cancer
6 months ago
My big discovery. Sjogren’s UCTD Fibro…
in my constant quest for understanding so I can help myself I have made a big discovery. About 5 years ago I was diagnosed with Sjogren’s and I understood to be Raynauds, and dry eyes, mouth and vagina. This never sat comfortably with me, it didn’t cover my symptoms. I’m still struggling a lot with
in my constant quest for understanding so I can help myself I have made a big discovery. About 5 years ago I was diagnosed with Sjogren’s and I understood to be Raynauds, and dry eyes, mouth and vagina. This never sat comfortably with me, it didn’t cover my symptoms. I’m still struggling a lot with
IsleofWight1
in
LUPUS UK
26 days ago
MCTD diagnosis, finally!
Hi everyone. If you've been following my posts, you probably know I've been very frustrated with the NHS. I decided to go to India and get all my tests done and see a doctor as well. I'm in the clear for Hashimoto's, Coeliac disease, RA and lupus. I have mixed connective tissue disease. The increasing
Hi everyone. If you've been following my posts, you probably know I've been very frustrated with the NHS. I decided to go to India and get all my tests done and see a doctor as well. I'm in the clear for Hashimoto's, Coeliac disease, RA and lupus. I have mixed connective tissue disease. The increasing
MauveMouse
in
Thyroid UK
26 days ago
JUNE NEWSLETTER
our June newsletter will be coming out soon. If you are not already a member then sign up to the Pernicious Anaemia Society https://pernicious-anaemia-society.org/member/ so you don't miss out! If you are a member and are not getting your newsletter make sure to check in Spam/Junk or check that we
our June newsletter will be coming out soon. If you are not already a member then sign up to the Pernicious Anaemia Society https://pernicious-anaemia-society.org/member/ so you don't miss out! If you are a member and are not getting your newsletter make sure to check in Spam/Junk or check that we
PAScomms
in
Pernicious Anaemia Society
26 days ago
Spider Nevis, does anyone else have these?
Short story, hospitalised over a year ago with jaundice and ascites due to alcoholism, considered de compensated cirrhosis, original fibro scan read 22.2kpa, now it’s 9 and I’m considered to have fibrosis and not cirrhosis although my liver is obviously scarred and my doctor is quite honest when he said
Short story, hospitalised over a year ago with jaundice and ascites due to alcoholism, considered de compensated cirrhosis, original fibro scan read 22.2kpa, now it’s 9 and I’m considered to have fibrosis and not cirrhosis although my liver is obviously scarred and my doctor is quite honest when he said
Grassroots112
in
British Liver Trust
6 months ago
Intermittent fasting
Does anyone have experience with intermittent fasting? It is supposed to help with autoimmune diseases.
Does anyone have experience with intermittent fasting? It is supposed to help with autoimmune diseases.
Swizzly
in
PMRGCAuk
26 days ago
Is Low Dose Naltrexone (LDN) ever used in Sjogren's syndrome?
Is Low Dose Naltrexone (LDN) ever used in Sjogren's syndrome? Answered by Linda Elsegood, LDNRT Founder https://youtu.be/NQXRcsKpdOk
Is Low Dose Naltrexone (LDN) ever used in Sjogren's syndrome? Answered by Linda Elsegood, LDNRT Founder https://youtu.be/NQXRcsKpdOk
Shewulf
Administrator
in
LDN Research Trust
28 days ago
lupus or fibromyalgia
hi has anyone else in a similarly position my GP can’t tell whether I have fibromyalgia or lupus or a combination of the two
hi has anyone else in a similarly position my GP can’t tell whether I have fibromyalgia or lupus or a combination of the two
Pricey110
in
Fibromyalgia Action UK
28 days ago
fibromyalgia or lupus
hi has anyone else been diagnosed with fibromyalgia but you think it’s more likely to be Lupus. I am constantly tired and just don’t have any energy, hate direct sunlight and have constant pain in my joints. How do I get my GP to actually come to a conclusion it’s so frustrating not knowing.
hi has anyone else been diagnosed with fibromyalgia but you think it’s more likely to be Lupus. I am constantly tired and just don’t have any energy, hate direct sunlight and have constant pain in my joints. How do I get my GP to actually come to a conclusion it’s so frustrating not knowing.
Pricey110
in
LUPUS UK
28 days ago
Does fear play a role with pernicious anemia?
Hey guys, I hope this message finds you well. It's good to have a place to come that someone has some understanding of what you're going through! I messaged here before about having fear of a lot of things that I didn't have before this PA/B12 deficiency and sometimes I think of myself as a wimp because
Hey guys, I hope this message finds you well. It's good to have a place to come that someone has some understanding of what you're going through! I messaged here before about having fear of a lot of things that I didn't have before this PA/B12 deficiency and sometimes I think of myself as a wimp because
25092
in
Pernicious Anaemia Society
28 days ago
Answer to unknown question
Jan 2024 (after lots of research and nearly 3 years on from original diagnosis of Metastatic Prostate Cancer with extensive bone metastases) I have just worked out the answer to the question I didn't know I wanted to ask. Instead of worrying about PSA and other test results my real concern was "what
Jan 2024 (after lots of research and nearly 3 years on from original diagnosis of Metastatic Prostate Cancer with extensive bone metastases) I have just worked out the answer to the question I didn't know I wanted to ask. Instead of worrying about PSA and other test results my real concern was "what
Brendan1904
in
Advanced Prostate Cancer
6 months ago
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