Feeling deflated!!

[Mummymoors85]

After my last flare up I was finally diagnosed with PSC. Well I had a biopsy which showed chronic inflammation and the start of scaring.

But no true reason why this is happening. I'm currently under royal free for amyliodsis/periodic fever syndrome. The consultant passed it off as it's got be that because he hasn't a clue. 😡

Then I decided to try to go bk to work I did 3 hrs. Next day in bed. Really poorly sick, shaking, headaches etc. Tried again 3 days later same thing.

Now I fear I'm not going to be able to work. What do I do then?? Savings have gone now so I need to do something??🤔

So now I'm still none the wiser and worring about funds. And I have to wait till the end of November to see someone. 😩

[19581979]

Hi

It sounds like your going through a very rough time.

Have you joined the psc group? I don't know anything about your condition,I'm being honest but the group may be able to help you understand some of what you are going through. They may also have an idea of anything that might help, even if it is only what to avoid that will make things worse. Having been on this site for only a short time it has helped me so I think it is worth a try, as well as keep writing on here.

The next thing is finances. Something many of us have to face as being a problem. It sounds like you need to be on the sick at the moment. Will you qualify for any sick pay or if you have health insurance any payment from that? Sometimes it is better to have a straight period of sick than dipping in and out. You know your employer best on that.

The next is do you get on with your g.p.? Are they worth talking to about everything to see if there is anything that can be done to help while you are waiting to see the specialist? The other choice is do you have a specialist nurse you can talk with. If you write all of your concerns down you can talk to your local doctor or the specialist nurse. Failing that once you have written your list you could have a word with your consultants secretary to see if there is any way he can help with your condition before November.

Finally, I know that you have a lot of worries at the moment. Try and do something every day for at least 30 minutes that you enjoy. If you need to split it up to be manageable fine. But you need to give yourself this time. Use it to try and take yourself as much away from thinking about your worries as you can. Use it to remind yourself you are special.

Best of luck and keep in touch.

Gx

[PSCMartine]

Just wondering how you are getting on? You’ve had to wait a long time for your specialist appointment.

As you’ve been diagnosed with PSC, and you are describing symptoms that could be a PSC flare up (bacterial cholangitis) it might be that you need antibiotics. Flare ups in PSC are not necessarily an indication that the PSC is progressing, it could simply be an infection in the bile ducts that needs sorting out.

I hope you get chance to see the specialist soon. The PSC clinic at the Royal Free is great.