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Gaucher disease type 1 (GD1)
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Hi all you wonderful people , diagnosed with cirrhosis back in April , and ended up back in hospital for the whole of August with a bile duct infection , moving on now to November , bloods taken , no results given , figure wise only that , bloods are stable and improving , feeling 100% better , eating
Hi all you wonderful people , diagnosed with cirrhosis back in April , and ended up back in hospital for the whole of August with a bile duct infection , moving on now to November , bloods taken , no results given , figure wise only that , bloods are stable and improving , feeling 100% better , eating
wp69
in
British Liver Trust
8 months ago
Lupus SLE, APS, Vasculitis
I was officially diagnosed 3 weeks ago with Lupus SLE and Antiphospholipid Syndrome.and then last week I was informed a CT scan in Jan 21 I had a stroke which I was never informed about. I’ve had another CT scan nov 23 which has shown possible blood clot which I am awaiting mri results. Regardless
I was officially diagnosed 3 weeks ago with Lupus SLE and Antiphospholipid Syndrome.and then last week I was informed a CT scan in Jan 21 I had a stroke which I was never informed about. I’ve had another CT scan nov 23 which has shown possible blood clot which I am awaiting mri results. Regardless
Newlupus76
in
LUPUS UK
6 months ago
Really bad stomach and bowel cramps
Dry mouth and and all over pain stomach cramps and bowel cramps 111 just playing piped music for 15 minutes I think it's the lactulose cause it really fatigued also nausea blood pressure 153/90 pulse rate 106 111 was no help really feel sick and dizzy and I'm really thirsty blood pressure is still sky
Dry mouth and and all over pain stomach cramps and bowel cramps 111 just playing piped music for 15 minutes I think it's the lactulose cause it really fatigued also nausea blood pressure 153/90 pulse rate 106 111 was no help really feel sick and dizzy and I'm really thirsty blood pressure is still sky
Sheliabee
in
British Liver Trust
8 months ago
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Diagnosed in December 2022 with Stage 4 metastatic PC Gleason 4 + 3, due to a PSMA Pet Scan. Highest my PSA got was 7.4, Pet Scan discovered a small spot on my T2 vertebrae that the MRI and bone scan did not find. I subsequently started on a regimen of Lupron and Erleada, adjusted to the SE and
Diagnosed in December 2022 with Stage 4 metastatic PC Gleason 4 + 3, due to a PSMA Pet Scan. Highest my PSA got was 7.4, Pet Scan discovered a small spot on my T2 vertebrae that the MRI and bone scan did not find. I subsequently started on a regimen of Lupron and Erleada, adjusted to the SE and
Condor77
in
Advanced Prostate Cancer
6 months ago
Abdomen pain - IBS
I have suffered with IBS since for 35 years and the pain was always on the left hand side and lower bowel. Had alternating constipation and diarrhoea but managed with occasional use of fybogel. For the last couple of years however have had terrible upper abdomen pain and bloating too. Have had gastroscopy
I have suffered with IBS since for 35 years and the pain was always on the left hand side and lower bowel. Had alternating constipation and diarrhoea but managed with occasional use of fybogel. For the last couple of years however have had terrible upper abdomen pain and bloating too. Have had gastroscopy
Wobbies
in
IBS Network
6 months ago
Scan results
got af in august and lv was 35 percent.finally had mri results been waiting since November. It says ejection fraction is 51 percent what does this mean . Thanks
got af in august and lv was 35 percent.finally had mri results been waiting since November. It says ejection fraction is 51 percent what does this mean . Thanks
Jarvo977
in
AF Association
5 months ago
I am 70 years of age & pretty much alone
I have had one sided thyroid problem for 25yrs & tests say its working fine but I gained 21 pounds over 3 weeks, all the usual underactive thyroid symptoms but no meds. All that's on offer is surgery, I have been told for many years you have abnormal cells, not cancerous but could turn that way. I have
I have had one sided thyroid problem for 25yrs & tests say its working fine but I gained 21 pounds over 3 weeks, all the usual underactive thyroid symptoms but no meds. All that's on offer is surgery, I have been told for many years you have abnormal cells, not cancerous but could turn that way. I have
Floral777
in
Thyroid UK
6 months ago
PSA increase nearly one year after triplet therapy (mHSPC), what's next?
Hello everyone, thank you for all your help for a year. My dad went from a high of 3103 PSA to a nadir of 44. He unfortunately couldn't reach a <1 result but it had stabilized for a few months after his docetaxel + zytiga + prednisone. Unfortunately his new result is 67 PSA exactly a year since diagnosis
Hello everyone, thank you for all your help for a year. My dad went from a high of 3103 PSA to a nadir of 44. He unfortunately couldn't reach a <1 result but it had stabilized for a few months after his docetaxel + zytiga + prednisone. Unfortunately his new result is 67 PSA exactly a year since diagnosis
Sissel25
in
Advanced Prostate Cancer
8 months ago
Prednisolone and blood thinners
As well as having PMR I also have Atrial Fibrillation. I am currently on 6mg of prednisolone.My GP is reluctant to prescribe a DOAC blood thinner for the Afib, because he says there is a risk of gastric bleeding.I am friendly with two retired GP's who are both of the opinion that this shouldn't be an
As well as having PMR I also have Atrial Fibrillation. I am currently on 6mg of prednisolone.My GP is reluctant to prescribe a DOAC blood thinner for the Afib, because he says there is a risk of gastric bleeding.I am friendly with two retired GP's who are both of the opinion that this shouldn't be an
Seamab
in
PMRGCAuk
5 months ago
Misdiagnosis
I am reasonably new to this site and have found it incredibly useful and informative. However, I recently received a bombshell, in that I have possibly been misdiagnosed with AF. I visited my GP at the end of September in 2023 with severe palpitations and given three ECGs. Two of these were viewed by
I am reasonably new to this site and have found it incredibly useful and informative. However, I recently received a bombshell, in that I have possibly been misdiagnosed with AF. I visited my GP at the end of September in 2023 with severe palpitations and given three ECGs. Two of these were viewed by
Maglyn
in
AF Association
5 months ago
continuous AF ?
hi everybody, I’m 63 and have always kept myself pretty fit and healthy. I’m 5’8’ and 10 stone.I lead an active life, running around my little farm place, riding horses etc Always on the go at 90mph! My diet is healthy, most of it homegrown. I do/did enjoy a glass of white wine in the evenings with
hi everybody, I’m 63 and have always kept myself pretty fit and healthy. I’m 5’8’ and 10 stone.I lead an active life, running around my little farm place, riding horses etc Always on the go at 90mph! My diet is healthy, most of it homegrown. I do/did enjoy a glass of white wine in the evenings with
Canteringon
in
AF Association
5 months ago
Beta blockers making me feel awful after 13 yrs ?
hello can anyone advise please I have paramoxol af , have had 2 ablations, and treating a bit they couldn’t do at the time with meds , flecinide 50 mg , Bisopropol 2.5 in morning 50mg flecinide bisoprolol 1.25 evening, have had no side effects for 13 yrs , but for months now I have been experiencing
hello can anyone advise please I have paramoxol af , have had 2 ablations, and treating a bit they couldn’t do at the time with meds , flecinide 50 mg , Bisopropol 2.5 in morning 50mg flecinide bisoprolol 1.25 evening, have had no side effects for 13 yrs , but for months now I have been experiencing
Prosecco1997
in
Atrial Fibrillation Support
5 months ago
Travelling abroad with coeliac
Hi Recently been diagnosed with coeliac disease and going for a European interrail trip in the summer. Probably staying in hotels 1 or 2 nights before going to a different country. Can anyone give me some advice which countries are good with gluten free foods and any practical advice. e.g. do I take
Hi Recently been diagnosed with coeliac disease and going for a European interrail trip in the summer. Probably staying in hotels 1 or 2 nights before going to a different country. Can anyone give me some advice which countries are good with gluten free foods and any practical advice. e.g. do I take
Welshtoffee
in
Gluten Free Guerrillas
6 months ago
B12 injections frequency
Hi I diviculutis (diagnosis November 2022) and in March 2023 was told that I have B12 malabsorption after a blood test due to this I have been having B12 injections every 12 weeks since then. I have also been diagnosed with coeliac disease a few months ago. My problem is around 3 weeks before
Hi I diviculutis (diagnosis November 2022) and in March 2023 was told that I have B12 malabsorption after a blood test due to this I have been having B12 injections every 12 weeks since then. I have also been diagnosed with coeliac disease a few months ago. My problem is around 3 weeks before
Welshtoffee
in
Pernicious Anaemia Society
6 months ago
PSA analysis 6 months after radiation
In January I will be 6 months post radiation to the prostrate and complete pelvic area. I was on Lupron for 6 months - 1 month prior and 5 months post radiation. I also was on Casodex for one month prior to the start of Lupron to lessen the flare. At 3 months post radiation PSA and Testosterone were
In January I will be 6 months post radiation to the prostrate and complete pelvic area. I was on Lupron for 6 months - 1 month prior and 5 months post radiation. I also was on Casodex for one month prior to the start of Lupron to lessen the flare. At 3 months post radiation PSA and Testosterone were
Mgtd
in
Advanced Prostate Cancer
8 months ago
stress related relapse?
Hi All. Down to 6mgs Pred for GCA/ PMR. was doing well with rest and exercise and then hubby had double bypass operation just over two weeks ago. Am now getting the odd sharp pain in the temples about once a day. Really sharp. Wondering if I should go back up to 10 mgs for a week or two. Really hate
Hi All. Down to 6mgs Pred for GCA/ PMR. was doing well with rest and exercise and then hubby had double bypass operation just over two weeks ago. Am now getting the odd sharp pain in the temples about once a day. Really sharp. Wondering if I should go back up to 10 mgs for a week or two. Really hate
CathyMeg
in
PMRGCAuk
5 months ago
MyLupus mobile phone app aims to help patients in care decisions
MyLupus, a new mobile phone app that’s meant to be used between doctor visits, was designed to help people with moderate to severe lupus make more-educated healthcare decisions. The free application was developed by a team of scientists — including rheumatologists at the University of Alabama at
MyLupus, a new mobile phone app that’s meant to be used between doctor visits, was designed to help people with moderate to severe lupus make more-educated healthcare decisions. The free application was developed by a team of scientists — including rheumatologists at the University of Alabama at
lupus-support1
Administrator
in
LUpus Patients Understanding and Support
6 months ago
Fibroscan update
Hello. I had a fibroscan at a BLT roadshow 6 months ago which scared me as it was 11.7kpa and cap 218. I'm a 45yo female. I was sent for an ARFI ultrasound after this by my GP, which scored me as being at the lower end of F2 fibrosis ( 1.25m/s) with mild to moderate fatty infiltration. The ultrasound
Hello. I had a fibroscan at a BLT roadshow 6 months ago which scared me as it was 11.7kpa and cap 218. I'm a 45yo female. I was sent for an ARFI ultrasound after this by my GP, which scored me as being at the lower end of F2 fibrosis ( 1.25m/s) with mild to moderate fatty infiltration. The ultrasound
Dontworrydarling
in
British Liver Trust
8 months ago
Ambroxol update
I just received this from PD front line: Dear Mr..In January of this year, Cure Parkinson’s and partners announced funding for the starting up of a Phase 3 clinical trial to evaluate the disease modifying potential of a cough medicine called ambroxol in people with Parkinson’s. Preclinical data in models
I just received this from PD front line: Dear Mr..In January of this year, Cure Parkinson’s and partners announced funding for the starting up of a Phase 3 clinical trial to evaluate the disease modifying potential of a cough medicine called ambroxol in people with Parkinson’s. Preclinical data in models
CuriousMe12
in
Cure Parkinson's
8 months ago
Curious
Hi wondering if anyone has had groin discomfort in their CLL journey, l have for a couple of weeks on and off,l do gardening when fatigue allows me too so could be a strain,thanks all.
Hi wondering if anyone has had groin discomfort in their CLL journey, l have for a couple of weeks on and off,l do gardening when fatigue allows me too so could be a strain,thanks all.
sun_flower
in
CLL Support
11 months ago
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