Where I'm at, Dr evil.

[Porphyriamaniac]

Hi all, hope you're well? Dr evil was a delight 😊 spent well over an hour talking with me and fiancee. He has seen around 60 cases of porphyria cutanea tarda in 30 years, he didn't treat me like a guinea pig, though he did call his young colleague in to look at my ugly hands 😂 and he was very impressed I'd diagnosed myself. I don't have any of the factors that can bring it about including haemochromatosis 🤗. I probably have a faulty gene, which they don't test as even if you inherit it, the penetrance is low so you'll probably never be symptomatic, I'm just a lucky bugger 😂 good news for my kids though. I showed him my minging skin photo's and im now being tested for cushings disease aswell 🤯 wasn't even on my radar but I guess he knows what he's looking at? Anyhow I'm now under him at st James' and haemotologist at local hospital. I start my venesections on Friday, a pint of blood out every 2 weeks till ferritin is 50, this is where it will be kept forever with the blood lettings, for the pct to stay in remission and for me to be symptom free. I'm a bit nervous as it's quite aggressive bleeding every two weeks and im beyond tired as chuff as it is, I think I'm in good hands finally though. The liver will be kept an eye on as there's extra risk of damage and cancer. Could be worse. Xxxx

britishlivertrust.org.uk/li...

[GrandmaDylan]

Hi Stacey, I had a look at your previous posts and obviously saw your skin. I hope it's improved now and now the summer is over it must be a little easier for you. I'm sure that you're in good hands now and can be reassured that you are being monitored by experts. Take care, Deb

[Porphyriamaniac in reply to GrandmaDylan]

Hi Deb, thankyou for your reply 🙂 it was a mess wasn't it! It's not as bad now,photo is from when I didn't know fully what I was dealing with. My feet have been the worst for blistering and scarring this year. The Summer is a nightmare,as i can't really avoid it fully. It's a pain in the bum, it's ruined my looks, confidence and health but it's treatable. I feel lucky I'm now diagnosed properly and being treated, it's taken a good 3 years. How are you doing? I know you're waiting for a proper diagnosis too, the waiting and not knowing is the worst..but you will get there. Xxxx

Below is a link about the skin porphyrias including mine pct, some of them are terrible, they can't leave the house in daylight, these are the ones that really suffer and thats why they called us vampires back in the day porphyria.org.uk/?page_id=267.

[GrandmaDylan in reply to Porphyriamaniac]

I'm glad that your skin is better than it was. I'm not vain but everyone makes a snap judgment on peoples appearance and I'm sure you were conscious of that. Three years is a long time to wait for a diagnosis. I'm frustrated with waiting. I paid to see a specialist when I was originally diagnosed by my gp as it was a minimum wait of 18 weeks to see someone. The specialist then put me on his nhs list and referred me for a ct which I had 3 weeks ago. The results won't be back for 6 weeks then I'll have to wait to see him again about the results and what happens next. I just want to know which type of cirrhosis I have and what if anything can be done. At the private consultation he said I'd need a bone scan, a capsule endoscopy and a blood test to check for autoimmune...goodness knows when I'll get these done. Xx

[Porphyriamaniac in reply to GrandmaDylan]

I'm not really vain either Deb, but as you say people do judge and I tend to hide behind my hair! 😁. 3 years of odd symptoms, it's quite rare that's why it's taken so long, I suspect many go undiagnosed. I'm sorry you're in limbo, the nhs is great or at least they've been great to me but the waiting lists are so long. I waited around 7 months for first appointment with haemo till I rung pals and complained but after first appointment it moved quick. In the meantime all you can do is keep talking on here and look after yourself as best you can until you get some answers, easier said than done i know when you're worried and feel like crap. You're moving in the right direction, you just need that initial appointment with nhs consultant to get ball rolling, don't hesitate to ring pals nobody should wait longer than 18 weeks. I hope it's not too much longer Xxxx