Ayrshire PBC Suffers

[JaniceK]

Is there anyone out there from Ayrshire or surrounding areas. I did have contact with a lovely lady from Ayr and one from Millport, however, I have not been on for some time.

Jan

[Hidden]

Have you tried contacting the PBC Foundation, they may have volunteers in that or the nearby area, it’s worth a try.

[millieja]

On the emails from HealthUnlocked at the bottom there are 4 circles click on the circle that says `Meet Others`

[CatGus]

Hi Janice, I'm Heather from North Ayrshire and diagnosed with PBC on 08 03 2020, then lockdown

[JaniceK in reply to CatGus]

Hi CatGus I was diagnosed in 2004 with PBC and was put on the Urso immediately, and still on them, not as high a dose now. When I was diagnosed like everyone you panic, however I have been carrying on my life up until about two years ago, when on holiday I was really unwell with indigestion pains in my stomach, when I came home I contacted my GP who got me an urgent referral for a scope to discover that I have varices on my oesophagus and had to have them banded which is the first sign of anything to do with this illness in all these years. I have been under constant review since then having lots of scopes and at one point I was banded as a 4 in the scope level which is very high they have up to 5 levels. I was seeing my consultant every year, then when this happened it was every 6 months. However, when I last saw him he didn't want to see me for a year and reduced my doze of Urso, but was still getting scopes, due to lockdown I have not had one since January and was due one in March.

Like most people are saying you can get different symptoms, I also had the itch but didn't take anything, I get very fatigued, tired and cold which the symptoms are of CFS which I was diagnosed with in 2002.

I live in Heathfield area in Ayr and maybe once lockdown is open we could meet and attend the meeting that they have in Glasgow and sometimes they try and have a meeting in Ayr.

Let me know how you are getting on.

Janice

[CatGus]

Thanks Janice yes I wouldlike to attend meeting when lockdown eases. I will let you know how I get on when I write to my GP for some answers.

[JaniceK]

Hi Heather, write down what questions you want answers too thats what I did especially when I went to see my consultant, as he specialises in PBC thankfully when first diagnosed my GP is a liver consultant and he was really good, he has since retired and now i deal with the other GPs who are not so much up to answering questions, so that was why I had went to the consultant. Heather do you attend UHC and who is your consultant? Stay in touch keep me posted with updates.

Best wishes

Janice