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Gaucher disease type 1 (GD1)
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Can anyone help please?
Hi everyone. I am 9 years undiagnosed 🙄 my Rheumatologist thought I was a possible for Lupus but wasn't prepared to diagnose me there and then, this was 2015. I had had a positive Cryoglobulinemia blood test which was negative for Hep C, he said this was an indication of Lupus? Has anyone else got
Hi everyone. I am 9 years undiagnosed 🙄 my Rheumatologist thought I was a possible for Lupus but wasn't prepared to diagnose me there and then, this was 2015. I had had a positive Cryoglobulinemia blood test which was negative for Hep C, he said this was an indication of Lupus? Has anyone else got
Jodelights
in
LUPUS UK
3 months ago
cardiologist appointment
hello I went to see cardiologist today , was told no af , have tachycardia sinus rhythm , realy wanted some help with my meds as making me unwell , I’m now on bisop 2.5 twice per day , and can take flec if I want to I realy would like to take it but makes me feel very unwell , said I could take 50
hello I went to see cardiologist today , was told no af , have tachycardia sinus rhythm , realy wanted some help with my meds as making me unwell , I’m now on bisop 2.5 twice per day , and can take flec if I want to I realy would like to take it but makes me feel very unwell , said I could take 50
Prosecco1997
in
Atrial Fibrillation Support
1 month ago
Ischemic Cholangiopathy following liver transplant.
Hi All, I wonder if anyone on this site has been diagnosed or had a family member/friend receive a diagnosis or ischemic changiopathy following liver transplant surgery? I received an urgent transplant in December 2022 and recovered well up until April/May when the problems started. Symptoms have
Hi All, I wonder if anyone on this site has been diagnosed or had a family member/friend receive a diagnosis or ischemic changiopathy following liver transplant surgery? I received an urgent transplant in December 2022 and recovered well up until April/May when the problems started. Symptoms have
KateG94
in
British Liver Trust
6 months ago
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APS and Panic Attacks
Hi, I have been living with the diagnosis of APS since 2017 after a mini-stroke in my left eye, which fortunately left no damage. Recently, I switched from aspirin to warfarin after possibly experiencing another mini-stroke, though this hasn't been confirmed by tests. Sometimes, I feel dizzy, short
Hi, I have been living with the diagnosis of APS since 2017 after a mini-stroke in my left eye, which fortunately left no damage. Recently, I switched from aspirin to warfarin after possibly experiencing another mini-stroke, though this hasn't been confirmed by tests. Sometimes, I feel dizzy, short
Alessandra001
in
Hughes Syndrome APS Forum
1 month ago
Holidays
Hi all I'm going away for 6 weeks to france so I'm stocking up on meds. My question is how long can you go without apixaban in an emergency as I'm on 2 a day. Also on a small dose of bisop once a day. This is my first time away in a year since my stroke last July and a bit nervous 😓 Thank you
Hi all I'm going away for 6 weeks to france so I'm stocking up on meds. My question is how long can you go without apixaban in an emergency as I'm on 2 a day. Also on a small dose of bisop once a day. This is my first time away in a year since my stroke last July and a bit nervous 😓 Thank you
TillyBoss
in
Atrial Fibrillation Support
1 month ago
night cramps
Hi everyone, I’m new on this forum. I was diagnosed with Rheumatoid Arthritis 3 years ago, in the family genes!, I’m currently on Methotrexate (25mg). Seem to be ok until about 2 weeks ago when I started to experience severe night cramps in my legs and feet. My consultant tells me it wasn’t a symptom
Hi everyone, I’m new on this forum. I was diagnosed with Rheumatoid Arthritis 3 years ago, in the family genes!, I’m currently on Methotrexate (25mg). Seem to be ok until about 2 weeks ago when I started to experience severe night cramps in my legs and feet. My consultant tells me it wasn’t a symptom
sussiewong22
in
NRAS
3 months ago
Fatty liver in biopsy but not scans
Hiya, I’m just curious if anyone has had a similar experience where their liver biopsy results shows signs of fatty liver but ultrasounds/CT show an enlarged liver but no fatty liver signs. I’m wondering if this means it’s extremely early stages maybe?
Hiya, I’m just curious if anyone has had a similar experience where their liver biopsy results shows signs of fatty liver but ultrasounds/CT show an enlarged liver but no fatty liver signs. I’m wondering if this means it’s extremely early stages maybe?
Chaucer89
in
British Liver Trust
6 months ago
2nd Ablation woes
Hi I had a second ablation 2 weeks ago today. Everything went well and I felt happy and optimistic. Then a few days ago I went back into Af with an erractic heartbeat that is still continuing. Spoke to Arrythmia nurse and she advised this is quite common and I might need a cardioversion in 6 weeks after
Hi I had a second ablation 2 weeks ago today. Everything went well and I felt happy and optimistic. Then a few days ago I went back into Af with an erractic heartbeat that is still continuing. Spoke to Arrythmia nurse and she advised this is quite common and I might need a cardioversion in 6 weeks after
Twizzle1962
in
Atrial Fibrillation Support
2 months ago
How high is high phosphorous??
I just got labs back. I was happy to see the crazy good numbers. Even with 2 hours3 days a week. only. MY creatinine went down from almost 7 to 5.89. My bun, pth, potassium all went down and are in range. Calcium in range. Glucose in range. A1C 5.3. the only number that was bad was phosphorous which
I just got labs back. I was happy to see the crazy good numbers. Even with 2 hours3 days a week. only. MY creatinine went down from almost 7 to 5.89. My bun, pth, potassium all went down and are in range. Calcium in range. Glucose in range. A1C 5.3. the only number that was bad was phosphorous which
Bassetmommer
in
Kidney Dialysis
6 months ago
Adenomyosis, Endometriosis and Autoimmune diseases
Hi ladies, this question is just out of curiosity because I see several posts about a lot of us having a combination of Endometriosis/ Adenomyosis and autoimmune disease. Following all my symptoms (that got even worse since I have no therapy but only medication to ease the pain) now I got a possible
Hi ladies, this question is just out of curiosity because I see several posts about a lot of us having a combination of Endometriosis/ Adenomyosis and autoimmune disease. Following all my symptoms (that got even worse since I have no therapy but only medication to ease the pain) now I got a possible
Taikaei
in
Endometriosis UK
3 months ago
PSA Rising
Had surgery in November 2021. Gleason 4+3...Post surgery PSA was 0.01. Positive margin (1 millimetre). PSA has risen from 0.1 to 0.06 in 24 months. Doctor says I should do nothing. Until it hits 0.2. Next test is June 2024. Any advice will be appreciated.
Had surgery in November 2021. Gleason 4+3...Post surgery PSA was 0.01. Positive margin (1 millimetre). PSA has risen from 0.1 to 0.06 in 24 months. Doctor says I should do nothing. Until it hits 0.2. Next test is June 2024. Any advice will be appreciated.
Whatnext2019
in
Advanced Prostate Cancer
6 months ago
Flecainide before Cardioversion
My EP's plan was to have me start on Flecainide and then have Cardioversion in hopes that my heart would keep rhythm. EP changed his mind because my INR was below threshold and told me to not take it until AFTER the CV in case the med converted my heart. I was instructed to have an ECG done 2 days
My EP's plan was to have me start on Flecainide and then have Cardioversion in hopes that my heart would keep rhythm. EP changed his mind because my INR was below threshold and told me to not take it until AFTER the CV in case the med converted my heart. I was instructed to have an ECG done 2 days
Siebertgirl
in
Atrial Fibrillation Support
2 months ago
Advice Greatly Appreciated
Good Day, I would sooooo appreciate a response/advice/opinions.... I was recently advised by my GP (family doctor) that I have cirrhosis. This is of course terrifying...I apparently had sever fatty liver in July 2021 but I was sadly not informed of this. I would have turned it around immediately.
Good Day, I would sooooo appreciate a response/advice/opinions.... I was recently advised by my GP (family doctor) that I have cirrhosis. This is of course terrifying...I apparently had sever fatty liver in July 2021 but I was sadly not informed of this. I would have turned it around immediately.
Confused2024
in
British Liver Trust
6 months ago
Excruciating jaw pain
Over the past week, pain in my jaw has been getting worse. It’s now excruciating at times. It’s not there all the time but does often coincide with eating. Had a thorough dental examination and no sign of infection or necrosis (from Zometa). I’m taking cocodamol but it’s not enough. Any similar experiences
Over the past week, pain in my jaw has been getting worse. It’s now excruciating at times. It’s not there all the time but does often coincide with eating. Had a thorough dental examination and no sign of infection or necrosis (from Zometa). I’m taking cocodamol but it’s not enough. Any similar experiences
FortyWinks
in
Advanced Prostate Cancer
2 months ago
Vasculitis (especially CNS/cerebral) and incontinence
I was helping another cerebral/CNS vasculitis patient tonight about incontinence. Which can be a common symptom of brain vasculitis, whether a primary CNS/cerebral vasculitis, or secondary brain involvement from a systemic vasculitis like GPA. But vasculitis medics frequently under recognise incontinence
I was helping another cerebral/CNS vasculitis patient tonight about incontinence. Which can be a common symptom of brain vasculitis, whether a primary CNS/cerebral vasculitis, or secondary brain involvement from a systemic vasculitis like GPA. But vasculitis medics frequently under recognise incontinence
vivdunstan
Volunteer
in
Vasculitis UK
2 months ago
Thankyou
Thankyou to everyone for all the replies to my previous post. I have felt anxious because of being newly diagnosed and new to the meds so the replies have helped me greatly. I've still got an echo to come and 48hr ecg and I have the date for the ecg now. Thankyou once again.
Thankyou to everyone for all the replies to my previous post. I have felt anxious because of being newly diagnosed and new to the meds so the replies have helped me greatly. I've still got an echo to come and 48hr ecg and I have the date for the ecg now. Thankyou once again.
Exhiker
in
Atrial Fibrillation Support
2 months ago
Mr Geoff Lloyd
Diagnosed in 2010 with advanced PC. Prostatectomy in 2011 followed by the "all clear". PSA refused to disappear and so RT followed. PSA still present and PC nodules found in my lung in 2021. I then had a 6 session course of chemotherapy and have been on Abiaterone and Demoxosone drugs ever since.Nodules
Diagnosed in 2010 with advanced PC. Prostatectomy in 2011 followed by the "all clear". PSA refused to disappear and so RT followed. PSA still present and PC nodules found in my lung in 2021. I then had a 6 session course of chemotherapy and have been on Abiaterone and Demoxosone drugs ever since.Nodules
Churchman123
in
Advanced Prostate Cancer
6 months ago
iwatch setting - AF history or AF alert?
Prior to my ablation last October I had persistent Afib. Since then I have been in NSR. I have kept my iwatch monitor set to record “AF history” and it has consistently shown AF load to be 2% or under on the weekly notifications. Should I stay on this setting or should I now set it to show alerts the
Prior to my ablation last October I had persistent Afib. Since then I have been in NSR. I have kept my iwatch monitor set to record “AF history” and it has consistently shown AF load to be 2% or under on the weekly notifications. Should I stay on this setting or should I now set it to show alerts the
Rainfern
in
Atrial Fibrillation Support
2 months ago
Ramadan Autoimmune Health Survey (including vasculitis)
https://www.vasculitis.org.uk/news/ramadan-autoimmune-health-survey Please follow the above link for more details 👆
https://www.vasculitis.org.uk/news/ramadan-autoimmune-health-survey Please follow the above link for more details 👆
Suzi70
Administrator
in
Vasculitis UK
3 months ago
Lupus centre of excellence
Morning all, can anyone advise if they have been referred to a Lupus centre of excellence outside their area? If so was the referral done by GP?Many thanks
Morning all, can anyone advise if they have been referred to a Lupus centre of excellence outside their area? If so was the referral done by GP?Many thanks
Jenfy34
in
LUPUS UK
3 months ago
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