Fed up

[BabyK]

Anyone totally fed up with this diagnosis?

[Hidden]

I think we all feel like that from time to time. I’m a bit fed up of it at the moment as I spoke to my consultants registrar a few weeks ago for my half yearly appointment. I’m not responding to urso after being on it 2 years, I’ve never had an alp below 200x so I’m waiting to know what the plan is next and was told to wait for a letter. So I’m a bit impatient to hear from them, feel like I’m forever waiting for the postwoman!

[liver-bird]

Yes but it doesnt help I'm afraid 😪

[Pinkcrush in reply to liver-bird]

Why are you afraid?

[suzycatt1]

Since my diagnosis for PBC, about 5 years ago, I think I'm finding loads of things are different for me. I appear to be allergic to stuff that I never had a problem with. Fatigue is quite a problem for me sometimes, just having a shower can have an effect. Around the time I was diagnosed I noticed a problem with my left foot, now both feet, apparently it's something called 'peripheral neuropathy' . My GP explained that it is not uncommon with chronic liver problems. I was prescribed something called Gabapentin but doing a bit of research I decided not to take it. It can be quite painful and I think it's now happening in my hands. Together with all that, the platelets in my blood don't work properly and I get, what looks like veins bursting in my arms which can be quite painful when the blood vessel 'pops'. Why does my consultant ask to see me before she has the latest scan and blood results, she always requests them to be done after my appointment and then I wait about 6 months before I see her to get the results. I think I'm quite a positive person, but sometimes it's hard to handle when the would appear that my GP and Consultant make me feel that they are just paying 'lip service'. Never let off steam here before. Thank you for reading.