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💤 sleep
I've always been a good sleeper but following the stroke triggered by brain aneurysm surgery. I've been regularly finding myself waking at 1-2am thinking it's the morning and time to get up. I'm living in a rehab unit so there are always staff around to reorientate me to the time but it's an annoying
I've always been a good sleeper but following the stroke triggered by brain aneurysm surgery. I've been regularly finding myself waking at 1-2am thinking it's the morning and time to get up. I'm living in a rehab unit so there are always staff around to reorientate me to the time but it's an annoying
GardenElf
in
Brain Aneurysm Support
6 months ago
Coffee - links to autoimmune?
Dear PA members - there seems to be many articles about negative and positive impacts of coffee/caffeine on autoimmune diseases. Does anyone know /researched if coffee has a negative or positive impact on AG PA? Its not clear. Many thanks
Dear PA members - there seems to be many articles about negative and positive impacts of coffee/caffeine on autoimmune diseases. Does anyone know /researched if coffee has a negative or positive impact on AG PA? Its not clear. Many thanks
PAapr22
in
Pernicious Anaemia Society
2 months ago
Help with vitamins
My ferritin and B12 keep going down despite the fact that I take supplements. Since being diagnosed with Hypothyroidism, Coeliac and SIBO they were steadily going up - I got my ferritin from 2 to 75, but in the last year it’s gone down to 39. My B12 is at 318 and was almost 500 a year ago. Does anyone
My ferritin and B12 keep going down despite the fact that I take supplements. Since being diagnosed with Hypothyroidism, Coeliac and SIBO they were steadily going up - I got my ferritin from 2 to 75, but in the last year it’s gone down to 39. My B12 is at 318 and was almost 500 a year ago. Does anyone
Flossiewestie2020
in
Thyroid UK
2 months ago
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New experiences of diagnosis video for World Lupus Day
This World Lupus Day we're launching a new video with Khiry, Beth, and Maryann sharing their experiences of receiving a diagnosis of lupus. You can watch the video here: https://www.youtube.com/watch?v=7VxG2WbrsGI You can also read this blog article in which Khiry, Beth, and Maryann talk about their
This World Lupus Day we're launching a new video with Khiry, Beth, and Maryann sharing their experiences of receiving a diagnosis of lupus. You can watch the video here: https://www.youtube.com/watch?v=7VxG2WbrsGI You can also read this blog article in which Khiry, Beth, and Maryann talk about their
Debbie_kinsey
Administrator
in
LUPUS UK
2 months ago
Article: Exciting time for biological use in Lupus
https://www.healio.com/news/rheumatology/20240425/exciting-time-biologic-use-in-moderate-to-severe-lupus-rose-45-since-2021?utm_source=selligent&utm_medium=email&utm_campaign=news
https://www.healio.com/news/rheumatology/20240425/exciting-time-biologic-use-in-moderate-to-severe-lupus-rose-45-since-2021?utm_source=selligent&utm_medium=email&utm_campaign=news
VeeWat
in
LUPUS UK
2 months ago
PET Brain Scans Find ‘Smoldering’ Inflammation in Multiple Sclerosis Patients
A new study from Brigham and Women’s Hospital suggests PET brain scans could reveal hidden inflammation in patients with multiple sclerosis (MS) who are being treated with highly effective treatments. The findings were published in Clinical Nuclear Medicine.
https://appliedradiology.com/Articles
A new study from Brigham and Women’s Hospital suggests PET brain scans could reveal hidden inflammation in patients with multiple sclerosis (MS) who are being treated with highly effective treatments. The findings were published in Clinical Nuclear Medicine.
https://appliedradiology.com/Articles
BettysMom
in
My MSAA Community
2 months ago
PSA Risen in Last 6 months
Have been on here a week ago, explaining that my husband (who was diagnosed 10years ago) has now been diagnosed with Gastroporesis, so not eating much due to constant nausea and vomiting. We are due to see his Urologist in 2 weeks time, so had the dreaded PSA blood test. It had been almost undetectable
Have been on here a week ago, explaining that my husband (who was diagnosed 10years ago) has now been diagnosed with Gastroporesis, so not eating much due to constant nausea and vomiting. We are due to see his Urologist in 2 weeks time, so had the dreaded PSA blood test. It had been almost undetectable
Hidden
in
Advanced Prostate Cancer
6 months ago
Atarax 25mg...has anyone used it?
It's an antihistamine with sedative effects. My pharmacy suggested it as I sleep very badly and I have hay fever. After checking with my Lupus Specialist it was OK to take with my other meds I also searched online and saw its also used to treat lupus rashes and itchy skin. I'm hoping it might help my
It's an antihistamine with sedative effects. My pharmacy suggested it as I sleep very badly and I have hay fever. After checking with my Lupus Specialist it was OK to take with my other meds I also searched online and saw its also used to treat lupus rashes and itchy skin. I'm hoping it might help my
AnonLupi
in
LUPUS UK
2 months ago
Help - trouble with diagnosis
Hi there, Looking for some help/guidance here as im at a bit of a loss with what to do next. Sorry for the rambling but I feel so defeated Im34 YO Female, and for about 2 years on and off I have had a number of lupus symptoms, Raynaud's in my hands, joint pain, horrendous fatigue that means I sleep
Hi there, Looking for some help/guidance here as im at a bit of a loss with what to do next. Sorry for the rambling but I feel so defeated Im34 YO Female, and for about 2 years on and off I have had a number of lupus symptoms, Raynaud's in my hands, joint pain, horrendous fatigue that means I sleep
Severusisismydog
in
LUPUS UK
2 months ago
PSA Rising
Asking for a friend of my father this time. He had surgery in december 2022 and everything was removed including glands. Gleason 4+5. His PSA has risen från 0.1 to 0.14 in 12 months. His doctor says to do nothing until it hits 0.2. But shouldn’t he do more? Maybe he doesn’t have advanced cancer yet.
Asking for a friend of my father this time. He had surgery in december 2022 and everything was removed including glands. Gleason 4+5. His PSA has risen från 0.1 to 0.14 in 12 months. His doctor says to do nothing until it hits 0.2. But shouldn’t he do more? Maybe he doesn’t have advanced cancer yet.
TheTopBanana
in
Advanced Prostate Cancer
6 months ago
Living with lupus in 2024 survey - closing soon!
Lupus Europe is conducting a survey to gather insights into the experiences of individuals living with lupus across Europe. The survey is anonymous and should take approximately 10 minutes to complete. It is available in 19 different languages. To complete the survey, please click the following link
Lupus Europe is conducting a survey to gather insights into the experiences of individuals living with lupus across Europe. The survey is anonymous and should take approximately 10 minutes to complete. It is available in 19 different languages. To complete the survey, please click the following link
nakita_cambow
Moderator
in
LUPUS UK
2 months ago
Lupus Tumidus
Hi All - After months of burning and itching skin, intermittent exhaustion, irritability, on and off leg swelling and joint pain, I have been diagnosed with Lupus Tumidus. Rheumatologist has said it is not SLE and will likely never turn into SLE. (I am not convinced but one battle at a time). Does
Hi All - After months of burning and itching skin, intermittent exhaustion, irritability, on and off leg swelling and joint pain, I have been diagnosed with Lupus Tumidus. Rheumatologist has said it is not SLE and will likely never turn into SLE. (I am not convinced but one battle at a time). Does
TumidusG
in
LUPUS UK
2 months ago
Feeling lonely and fobbed off! What are these symptoms??
Hello, this is my first time posting so please bear with me.I am a 40 year old female. I was diagnosed with discoid lupus in 2005. Then a few years later, lupus panniculitis which is quite rare (fatty lumps under the skin which leave atrophies. (Mine are on my face, breasts, and arms). For the last
Hello, this is my first time posting so please bear with me.I am a 40 year old female. I was diagnosed with discoid lupus in 2005. Then a few years later, lupus panniculitis which is quite rare (fatty lumps under the skin which leave atrophies. (Mine are on my face, breasts, and arms). For the last
Starshine83
in
LUPUS UK
2 months ago
Social Isolation
Unfortunately, I don't have many friends for family to reach out to. MSAA's chat through HealthUnlocked here has provided me with much needed social connection. The MSAA help line suggested that I contact "MSFriends" so I just signed up for "MSFriends" peer support program through the National Multiple
Unfortunately, I don't have many friends for family to reach out to. MSAA's chat through HealthUnlocked here has provided me with much needed social connection. The MSAA help line suggested that I contact "MSFriends" so I just signed up for "MSFriends" peer support program through the National Multiple
donna0329
in
My MSAA Community
2 months ago
Do you have lupus or another autoimmune condition?
There is still time to complete the survey conducted by RAIRDA (Rare Autoimmune Rheumatic Disease Alliance) on what patients think about the quality of their care, guidance and treatment for their Rare Autoimmune Rheumatic Disease (RAIRD). This is to provide valuable insights into the way services are
There is still time to complete the survey conducted by RAIRDA (Rare Autoimmune Rheumatic Disease Alliance) on what patients think about the quality of their care, guidance and treatment for their Rare Autoimmune Rheumatic Disease (RAIRD). This is to provide valuable insights into the way services are
nakita_cambow
Moderator
in
LUPUS UK
2 months ago
After Transplant
I had my transplant 9 weeks ago I can’t believe the difference it has had. I sleep all night, no boiling up in the night, my breathing is better I use breathe so loud I think it was all the fluids inside me I was struggling to breathe I feel like I’m 20 years old again and I’m 50 . My mind is so much
I had my transplant 9 weeks ago I can’t believe the difference it has had. I sleep all night, no boiling up in the night, my breathing is better I use breathe so loud I think it was all the fluids inside me I was struggling to breathe I feel like I’m 20 years old again and I’m 50 . My mind is so much
lonmallin50
in
British Liver Trust
6 months ago
delayed reconstruction
I had a subdural haemorrhage in may 2023 removing most of the right side of my scull even encroached my forehead that’s some 10 months ago now. I was supposed to receive reconstructive surgery and have titanium implant to protect the sensitive area where my skin is my only protection to my brain. That
I had a subdural haemorrhage in may 2023 removing most of the right side of my scull even encroached my forehead that’s some 10 months ago now. I was supposed to receive reconstructive surgery and have titanium implant to protect the sensitive area where my skin is my only protection to my brain. That
Jodieb73
in
Headway
6 months ago
accidental overdose of thyroxine
I’m on 100 mcg thyroxine and the kart prescription they only had 25 mcg so I was taking 4 tablets a day and then the recent prescription was 100 mcg. I’ve just realised today that I’ve been taking 4 100 mcg a day I think for 4 days from how many are gone. In a bit of a panic. I’ve rang 111 and they called
I’m on 100 mcg thyroxine and the kart prescription they only had 25 mcg so I was taking 4 tablets a day and then the recent prescription was 100 mcg. I’ve just realised today that I’ve been taking 4 100 mcg a day I think for 4 days from how many are gone. In a bit of a panic. I’ve rang 111 and they called
Tjqui00
in
Thyroid UK
6 months ago
1 Year out Radiation treatment
2018, Gleason 9, family history, RP surgery. Not clear margin. PSA undetectable three years, then back knocking at the door, (.17 PSA rise 2022). BCR! PSMA scan clear. 35 IMRT Radiation treatments to surgery prostate bed, 6 months on Lupron. See my wonderful Radiation Onocolgist on Monday, Dr. Hung,
2018, Gleason 9, family history, RP surgery. Not clear margin. PSA undetectable three years, then back knocking at the door, (.17 PSA rise 2022). BCR! PSMA scan clear. 35 IMRT Radiation treatments to surgery prostate bed, 6 months on Lupron. See my wonderful Radiation Onocolgist on Monday, Dr. Hung,
rickyfish56
in
Advanced Prostate Cancer
6 months ago
panicking!
Hi, My husband was diagnosed over 10 years ago with Prostate cancer with PSA 18 and Gleeson 4+3. He was never offered prostatectomy as they said there was a small metastases on the pelvis. So he had 2 weeks of radiation on his hip, and was then treated with 6 monthly injections of Decapeptyl, which
Hi, My husband was diagnosed over 10 years ago with Prostate cancer with PSA 18 and Gleeson 4+3. He was never offered prostatectomy as they said there was a small metastases on the pelvis. So he had 2 weeks of radiation on his hip, and was then treated with 6 monthly injections of Decapeptyl, which
Hidden
in
Advanced Prostate Cancer
6 months ago
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