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Gaucher disease type 2 (GD2)
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Father has had PBC for 16 years - Odd complications since COVID?
Hello all, I wonder if anyone here who has PBC (or has a family member with PBC) has had similar experiences post covid? My father was diagnosed 16 years ago. Recently he contracted COVID and was hospitalised (he's also been a type 1 diabetic since birth, so 60 years). Within a day of getting COVID
Hello all, I wonder if anyone here who has PBC (or has a family member with PBC) has had similar experiences post covid? My father was diagnosed 16 years ago. Recently he contracted COVID and was hospitalised (he's also been a type 1 diabetic since birth, so 60 years). Within a day of getting COVID
Kylewillmott
in
PBC Foundation
7 months ago
blood test to identify neuroendocrine cancer asap
ok I repost this mainly because the University of Trento is one hour from here and I got good friends there (working on CRISPR)…together with Dana-Farber they have developed a blood test to identify if there is an endocrine prostate cancer and the subtype https://medriva.com/cancer/a-breakthrough-in-prostate-cancer-treatment-new-blood-test-identifies-neuroendocrine-subtype
ok I repost this mainly because the University of Trento is one hour from here and I got good friends there (working on CRISPR)…together with Dana-Farber they have developed a blood test to identify if there is an endocrine prostate cancer and the subtype https://medriva.com/cancer/a-breakthrough-in-prostate-cancer-treatment-new-blood-test-identifies-neuroendocrine-subtype
Maxone73
in
Advanced Prostate Cancer
7 months ago
Plant-based raw food diet eases symptoms of SLE, Sjögren’s: Report
More research needed into diet's role in autoimmune disease Three women with the autoimmune conditions systemic lupus erythematosus (SLE) and Sjögren’s syndrome saw their symptoms ease after starting a diet rich in plant-based raw foods, according to a recent case series report. The diet included
More research needed into diet's role in autoimmune disease Three women with the autoimmune conditions systemic lupus erythematosus (SLE) and Sjögren’s syndrome saw their symptoms ease after starting a diet rich in plant-based raw foods, according to a recent case series report. The diet included
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
5 months ago
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elevated Liver Enzymes
Hello, I am in need of advice. I have had mildly elevated liver enzymes and can’t figure out the cause of it. I have been tested for everything and anything related to the liver (autoimmune, hepatitis, liver diseases) I have had a normal ultra sound and fibroscan. All lab work is normal except AST and
Hello, I am in need of advice. I have had mildly elevated liver enzymes and can’t figure out the cause of it. I have been tested for everything and anything related to the liver (autoimmune, hepatitis, liver diseases) I have had a normal ultra sound and fibroscan. All lab work is normal except AST and
Lresinger
in
British Liver Trust
7 months ago
Researchers Develop "Two-Headed" Drug to treat Parkinson's Disease
Although the following research is in its infancy, it has merit and looks promising. In particular that they want to try and make it a oral bio-active medicine. Researchers have created a ‘two-headed’ drug that prevents the production of the toxic protein linked to Parkinson’s disease before destroying
Although the following research is in its infancy, it has merit and looks promising. In particular that they want to try and make it a oral bio-active medicine. Researchers have created a ‘two-headed’ drug that prevents the production of the toxic protein linked to Parkinson’s disease before destroying
Baron1
in
Cure Parkinson's
7 months ago
⏰Do you have 15 minutes to spare?⏰
🌟 PARTICIPATE IN A RESEARCH STUDY EXPLORING THE CONNECTIONS BETWEEN PVCS 🫀, MENTAL WELL-BEING 🧠, HEALTH BEHAVIOURS🚶♂️, AND QUALITY OF LIFE! 🌟 🔍 What's Involved? 🔍 Complete two online surveys on Qualtrics. The first is a 15-minute exploration of your PVC journey; the second is a quick 5-minute
🌟 PARTICIPATE IN A RESEARCH STUDY EXPLORING THE CONNECTIONS BETWEEN PVCS 🫀, MENTAL WELL-BEING 🧠, HEALTH BEHAVIOURS🚶♂️, AND QUALITY OF LIFE! 🌟 🔍 What's Involved? 🔍 Complete two online surveys on Qualtrics. The first is a 15-minute exploration of your PVC journey; the second is a quick 5-minute
TracyAdmin
ArrhythmiaAlliance
in
Heart Rhythm Disorders Support
4 months ago
Thoughts?
Hello, Decided to ring the liver trust nurses today . I spoke to a lovely lady who went through stuff with me but as she said didn’t know my medical details but encouraged or questioned should I be asking my consultant about my prognosis. Am I alone with now being scared to death that if I should ask
Hello, Decided to ring the liver trust nurses today . I spoke to a lovely lady who went through stuff with me but as she said didn’t know my medical details but encouraged or questioned should I be asking my consultant about my prognosis. Am I alone with now being scared to death that if I should ask
Etymolog
in
British Liver Trust
7 months ago
Update on my father
Dad was diagnosed in 2016 stage 4, bones and lymphnodes. We dont have a gleason score because his diagnoses was found through a hip xray after a fall and they biopsied his hip. He has had lupron, xgeva, bicalutamide and now he is on Xtandi. Dads last bone scan psa were July 8th. His bone scan showed
Dad was diagnosed in 2016 stage 4, bones and lymphnodes. We dont have a gleason score because his diagnoses was found through a hip xray after a fall and they biopsied his hip. He has had lupron, xgeva, bicalutamide and now he is on Xtandi. Dads last bone scan psa were July 8th. His bone scan showed
Radtech40
in
Advanced Prostate Cancer
7 months ago
Should something be done with a “moderately high” ALP?
Good moring! I had my bloods drawn last week and both ALT and AST went back to normal. My GGT came down but not normal, and ALP stayed the same as three months ago at 177 It was previously 385. (here, the ULN is 122). I have been on Urso for nine months, but only on the optimal dose for four months
Good moring! I had my bloods drawn last week and both ALT and AST went back to normal. My GGT came down but not normal, and ALP stayed the same as three months ago at 177 It was previously 385. (here, the ULN is 122). I have been on Urso for nine months, but only on the optimal dose for four months
Gaspereaux
in
PBC Foundation
2 days ago
Getting tested after taking any supplements...
Hi there, I found this information after worrying that I have lost my mind due to GP responses, on top of all of my very B12 like symptoms, Inc. Neurological. How I felt was gradual at first and more like fatigue and gastic upsets, intermittent mild tingling, over the last few years, but last year my
Hi there, I found this information after worrying that I have lost my mind due to GP responses, on top of all of my very B12 like symptoms, Inc. Neurological. How I felt was gradual at first and more like fatigue and gastic upsets, intermittent mild tingling, over the last few years, but last year my
Suffering_sunny
in
Pernicious Anaemia Society
5 months ago
Gastro Appointment
hi everyone, I promised I would update you after my gastro appointment, there is not a lot to say really, he told me the past ct scan showed diffuse fatty liver and the ultrasound showed severe liver impairment, he then told me that the fibroscan done by them showed significant scarring, then showed
hi everyone, I promised I would update you after my gastro appointment, there is not a lot to say really, he told me the past ct scan showed diffuse fatty liver and the ultrasound showed severe liver impairment, he then told me that the fibroscan done by them showed significant scarring, then showed
Sophia1968
in
British Liver Trust
7 months ago
14 months post Successful Ablation & increasing Arrythmias.
Hi I am getting Arrythmias with increasing regularity after ablation Feb 23.Last talk with Arrythmia Nurse was Atrial ectopics with pause.My readings now seem to have chucked in a couple of premature beats. It feels like I am having AFib symptoms.Light headed,dizzy, exhausted but not all the time. Where
Hi I am getting Arrythmias with increasing regularity after ablation Feb 23.Last talk with Arrythmia Nurse was Atrial ectopics with pause.My readings now seem to have chucked in a couple of premature beats. It feels like I am having AFib symptoms.Light headed,dizzy, exhausted but not all the time. Where
kkatz
in
Atrial Fibrillation Support
4 months ago
A return of the dreaded mongrel .......... ????? Part 2
Well, made contact with surgery ( I was 10th in the queue ) couldn't talk to anyone ( GP or Pharmacist ). Left a message and a return phone call a few hours later told me to take 2 blood pressure readings am and pm. for the next 7 days. Excellent stalling practice ! So, I've decided on a more aggressive
Well, made contact with surgery ( I was 10th in the queue ) couldn't talk to anyone ( GP or Pharmacist ). Left a message and a return phone call a few hours later told me to take 2 blood pressure readings am and pm. for the next 7 days. Excellent stalling practice ! So, I've decided on a more aggressive
BenHall1
in
Atrial Fibrillation Support
4 months ago
A quick update for those that remember my recent posts about the Ablation complications!
Ablation 16/3, artery got damaged, 3 outpatient appointments, 2 failed attempts at thrombin infusion under ultrasound, emergency 3 day admission to hospital with emergency pseudoaneurysm and arteriovenous fistula repair (pretty major surgery involving patching the damaged artery with cow veins) . Most
Ablation 16/3, artery got damaged, 3 outpatient appointments, 2 failed attempts at thrombin infusion under ultrasound, emergency 3 day admission to hospital with emergency pseudoaneurysm and arteriovenous fistula repair (pretty major surgery involving patching the damaged artery with cow veins) . Most
AmandaLouise77
in
Atrial Fibrillation Support
4 months ago
Flare or Adrenal Crisis
During the Christmas period I had a series of very stressful situations , including transatlantic travel. Upon returning I experienced extreme burning pain in my neck, arms, shoulders and groin. I could barely get out of bed. It was the same pain I experienced when I was first diagnosed with PMR 2 1
During the Christmas period I had a series of very stressful situations , including transatlantic travel. Upon returning I experienced extreme burning pain in my neck, arms, shoulders and groin. I could barely get out of bed. It was the same pain I experienced when I was first diagnosed with PMR 2 1
Belfastman
in
PMRGCAuk
7 months ago
Tuesday's Tip
[i]
According to Dr. Jones' book sometimes people will stop taking their Urso because their liver function tests have returned to normal. If your liver enzymes have returned to the normal range it just means that the Urso is working. The PBC isn't cured - it is just controlled.
[/i] [i]
We don't
[i]
According to Dr. Jones' book sometimes people will stop taking their Urso because their liver function tests have returned to normal. If your liver enzymes have returned to the normal range it just means that the Urso is working. The PBC isn't cured - it is just controlled.
[/i] [i]
We don't
DonnaBoll
Administrator
in
PBC Foundation
11 days ago
Bob @ 100
Hello group Some time since I posted as I had a flutter ablation 4 years ago and have had no symptoms since. Recently I have started to get a high heart rate about 140 beats which I can control with Verapamil 120 mg taken as pip. which I was given after my flutter procedure, (out of date now but all
Hello group Some time since I posted as I had a flutter ablation 4 years ago and have had no symptoms since. Recently I have started to get a high heart rate about 140 beats which I can control with Verapamil 120 mg taken as pip. which I was given after my flutter procedure, (out of date now but all
bobpitt
in
Atrial Fibrillation Support
4 months ago
Nebivolol and cold toes/fingers?
I'm still suffering badly with cold extremities on Bisoprolol, does anyone that takes Nebivolol experience similar issues at all?
I'm still suffering badly with cold extremities on Bisoprolol, does anyone that takes Nebivolol experience similar issues at all?
kitenski
in
Atrial Fibrillation Support
4 months ago
I am 53 and require an ICD
I am 53 and require an ICD and scared but also want and need to continue an active life. Currently in Atrial Fibrillation and a degree of heart block. I also have a cardiac Gene that causes issues with conduction and cardiomyopathy. Looking for reassurance and normality and would like to live till at
I am 53 and require an ICD and scared but also want and need to continue an active life. Currently in Atrial Fibrillation and a degree of heart block. I also have a cardiac Gene that causes issues with conduction and cardiomyopathy. Looking for reassurance and normality and would like to live till at
Pottsgene
in
Heart Rhythm Disorders Support
4 months ago
What to do?
Originally I was diagnosed with lung fibrosis and earlier this year I received confirmation that I have CPFE combined pulmonary fibrosis and emphysema.I suffer from shortness of breath and some everyday tasks are becoming more difficult. Even putting my socks on can leave me short of breath. I have noticed
Originally I was diagnosed with lung fibrosis and earlier this year I received confirmation that I have CPFE combined pulmonary fibrosis and emphysema.I suffer from shortness of breath and some everyday tasks are becoming more difficult. Even putting my socks on can leave me short of breath. I have noticed
Wibble28
in
Lung Conditions Community Forum
4 months ago
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