Pbc in question

[carigirl]

Found positive AMA, Ana, elevated enzymes, and more GI tests to come. Feel all sorts of energy loss some days_, fatigue, headaches, and constantly cold, freezing cold in the hands and feet and nose....Rhum doctor believe its this pbc and now idk what to believe. ,,,, advice?

[liver-bird]

Hi Carigirl, sorry to hear of your problems. PBC Foundation have good information and advice you can trust. They host this site and you should click on their icon at top of page to talk to them.

I too experience periods of cold hands feet and nose usually early evening and it lasts a couple of hours. I'd be interested to know what you are told about this symptom. Good luck, keep in touch. Diane

[GrittyReads]

Hi carigirl,

So sorry that you are having to go through this, but try not to worry as it is better that tests are done and the experts find out exactly what is going one. It may seem a huge shock at the moment, but it is better to know.

Are you in the UK, and have you seen a liver specialist, a heptologist? Or only the Rheumatologist so far? Things will get clearer, I'm sure as more is done, but meanwhile you might want to phone the PBC Foundation [they host this PBC site on 'Health Unlocked' and there's a link to their website at the top of this page]. There is loads of up-to-date info on the site, and a number to phone to talk to their advisors. It's not scary, and they are really understanding and helpful. It might help to have any letters, or test results to hand; your GP should be able to give you copies of any tests that have been done, as well as anything the consultants have sent - although hospitals should send copies to you as well.

One thing I would NOT do is read stuff online about PBC, as so much of it is old, out-of-date, and overly negative. The situation for most people with PBC has improved hugely in the last few years, but much online info does not reflect this.

Obviously you can post on here any time: it is a great and supportive community and everyone will be helpful. However, one of the problems with PBC is that its onset, development, symptoms ... and virtually all other aspects ... can be massively different for different people, so all of our accounts can vary. Therefore a lot of what we say may not be relevant to your circumstances, especially as you don't yet know that you have PBC for certain. However, as you know more and more, people on here will be able to offer advice, and you will be able to identify who is in a similar situation.

Above, all try not to worry. I know that's easier said than done, but treat yourself, do some things to take you mind off things. With any illness, stress is one of the worst enemies, so do whatever you love to help yourself improve your strength and de-stress. Exercise, and good diet are also proven to be helpful in PBC.

Take care, I hope you get lots of useful info and answers from your medics and from the PBC F people.

Gritty x

[SimbaTutor]

Carigirl, I also have trouble being cold in the early evenings. I've learned to get under my cuddly lap robe when I am through teaching so I can warm up. Since I swing from too hot to too cold during day and night, it is becoming interesting determining how to dress with the day's weather forecast. The fatigue, energy loss, and headaches are also symptoms I struggle with. The diagnosis of PBC last June finally gave me the reasons for my lack of energy to keep going when others were still going strong. Basically, you learn how to meet your physical needs along the way. I hope you get definite information soon...I think it is harder to be in the waiting to know phase. Although the diagnosis may be unsettling due to the many unknowns, this disease is manageable when you are kind to yourself and rest along the way. Blessings!