Experiences with

Alexander disease

Last week when I went to the neuro-opthalmologist, we had just experienced some 90+ degrees days in Indiana, USA. Even though my optic nerve and visual field scan had not changed, I had more trouble reading the eye chart. The doctor explained Uhthoff's phenomenon to me when I said my right eye was

Had fibroscan today. Score of 9.2. Is this reversible? I was pleased it wasnt cirrhosis. I was told it was mild fibrosis but online charts indicate f2 as 'significant fibrosis with evidence of progressive liver disease' I have AIH & am taking budesonide 9mg daily. My LFTs have started to normalise so

Hi, I am very worried about my liver tests, and possibly PBC. I have been having yearly blood tests since 2008 (except 2019 and 2020), LFT were always normal, until November 2021, my AST, ALT, was about 3 times the norm and GGT was 4 units up. The tests were repeated in January, enzymes went slightly

New international study, below [1]. "Secondary analysis of COU-AA-301 and COU-AA-302" [2] & [3]. Objective: To determine whether metformin or statins ± abiraterone acetate plus prednisone/prednisolone (AAP) influence OS {overall survival} and PSA-RR {prostate specific antigen response rate}.

Just for a quick re cap, diagnosed December 2020. RP January 2021 with Gleason 4+3, extra-prostatic extension, 1 node pos T3aN1. Started ADT and abiraterone then 4m later pelvic RT. PSA still undetectable and Testosterone <2. The original plan was for 2 years of ADT and AA. At ESMO 2021 Dr

Yesterday I made a reply to one of Marc's recent posts, but there was some very interesting information in that post that I would like to highlight as I feel it is very important for anyone living on this planet in the age of Covid! In my reply to Marc, I linked to a July 2021 study that showed that

Hi all. This situation is a bit abnormal, but wanted to gather some thoughts. My father was DX'ed last September with Gleason 4+4, tertiary 5. He had his RALP + PLND 2 weeks ago. Pathology showed ECE+, PNI+, SVI+, LVI-, 2/16 small LN mets (unfortunately, poorer than what imaging showed), and close PSM

Hi, I've recently been diagnosed with alcohol related cirrhosis. Had a long conversation with my consultant last week and apparently I'm at stage A which is quite good to hear. I have a gastroscopy booked for 26th to check for varices and will be having a bone scan, vitamin check and tests to check

Just wondering if anyone knows what trace ascites means exactly. It was reported on my wifes mri,she has stage 3 cirrhosis caused by pbc,diagnosed 4 years ago.Has 6 month ultrasounds and mris alternatively, first time seeing this on a report,thank you

I have done Carbo/Taxol, Avastin, Carbo/Caelyx, Rubrac a and now Anastrazole. I have a scan coming up, but lately can feel the cancer spreading and am resorting to pain killers. Can anyone who has had this many lines of chemo tell me what else was available for them to try, and also how successful it

Hi, following my recent post highlighting persisting symptoms of fatigue, nausea, blurred vision & short breath, being on 100mg of Teva Levothyroxine, please could comment on test results. Been referred back to Endocrinologist who discharged me last year…seem to be going in circles. Can only upload

Hi ckd friends, Do you have a family history of kidney disease that includes a parent, grandparent, Aunts and uncles etc with no explanation for the cause? Do you have a bland urinalysis (no blood and little to no protein), with near normal blood pressure and all your other labs are in line? So did

I live with my parents, always have done. We are very close, they are my best friends. 3 months ago, my life started to fall apart. My dad got diagnosed with liver cancer caused by Hemochromatosis. We have fought so hard but the cancer took over and he was too weak to be able to have any form of treatment

Hello everyone I had liver cancer in 2018 and unfortunately have been told yesterday I have lung cancer and will be needing chemotherapy however they said I will need a stronger chemo because they are treating it as liver cancer that has migrated to my lungs. I wanted to ask if anyone else has had a

It is a rainy stormy day in Perth, Western Australia, called the "most remote city in the world". I arrived here yesterday with more than 30 hours of travel from Oregon USA. Tomorrow I will get my first infusion of Lutetium 177-PSMA (mAb)-J591. An experimental and unproven new form of radioactive ligand

It is a rainy stormy day in Perth, Western Australia, called the "most remote city in the world". I arrived here yesterday with more than 30 hours of travel from Oregon USA. Tomorrow I will get my first infusion of Lutetium 177-PSMA (mAb)-J591. An experimental and unproven new form of radioactive ligand

Collectively, our findings provide direct evidence that TTFD administration induces voluntary locomotor activity via D1-receptor-mediated dopaminergic activity in the mPFC. TTFD also induces voluntary running in a dose-dependent manner, likely due to the same neural mechanism. This is the first study

Just about a year ago, I was diagnosed having Cirrhosis of the liver, the consultant asked if I would like to be put on a trial of a new medication (not told the name), I was told it would start early this year, When nothing happened, I started to chase this up (bearing in mind I was also told I would

Hi, I posted for the first time on this forum after my father (59) was diagnosed with stage IV prostate cancer in November of 2019. I want to share our progress in this fight so far so that it can be added to the repository and used by others down the line to make informed decisions about treatment

I was wondering if anyone who has been diagnosed with Crohn’s disease could help me. I developed a fistula in July’s of 2021. I have no family history of IBD disease. When I realized most people who get fistulas also have IBD I started having severe stomach pain 24-7 I couldn’t eat for months. I did