Good morning everyone
I have been following your blog posts already for the past few weeks and found your advice on this site very useful and re-assuring. So, thank you very much everyone!
On Wednesday I had my first appointment with the Liver specialist who confirmed my GP's diagnosis of PBC. I saw my GP in March for something very different and my LFT's came back very high (Gamma GT 970, Alkaline Phosphatase 400, with the transaminases only slightly raised GOT (AST) 58, GPT (ALT) 125 and a normal bilirubin, but I also had a high IGM - when my GP looked back at my previous bloodtest it was noticed that I had already last year very high LFT's, but for some reason no one took notice of that. Well, I was so shocked and the first thought which came to my mind was - I DON'T DRINK, oh my god what is happening to me? I was utterly scared for several weeks. Nevertheless, since I have been browsing your blogs a lot of my anxiety evaporated and I found myself much more calm about the whole situation, which did help me immensly on my first appointment on Wednesday
The liver specialist started me on Urso straight away at 15mg/kg 900 mg a day (also looking at my current weight that works out more than that).
However, I have been quite unwell since I had atypical pneumonia in January/February and had lots of problems unrelated to the liver. I have pre-existing stomach/gut problems and had for the past two month increased complaints and abdominal pain (middle and left side), but my GP felt that could be due to my high LFT's, which is not the case. I am awaiting now an OGD endoscopy to see if I may have got duodenal ulcers. I am to have some other investigations as well, but the doctor said that we first look at the blood results and wait for the OGD.
What did puzzle me a bit at my specialist appointment was that my doctor said that my pre-existing health problems don't quite fit the PBC package and now they are looking for other things (I only thought great, as if I don't have enough already). My pre-existing problems are congenital spina bifida with diastematoyelia (which causes chronic nerve compression and other pain since I am a teen), partial paralysis in my left leg, Raynaud, cryoglobulines ? (being tested as there have been confusing results) and chronic stomach/gut problems (I have been on a low fat/low sodium diet almost all of my life) and these are only some of my problems. What are your combinations of other health problems in conjunction with PBC? I have seen some of them already mentioned on the other blogs.
My main problems at present are fatigue, itching and sore joints, swelling of fingers and ankles, some kind of minor memory loss and I seem to have developed a spelling problem (English is not my first language, but I actually never had any major spelling problems) the abdominal pain with nausea ( I have lost over 6 kg in 4 weeks). I did have problems - which are gone now - with vertigo and headaches, but since these dissapeared I feel like a new person.
Nevertheless, despite all my health problems I always have been very active as my parents taught me from a very early age not to look at my limitations, but at the things I can do and make use of that. I have always had a very positive attitude and whatever comes now just has to arrange itself with my needs :).
Oh my, I just noticed that I managed to write a novella. I do hope you forgive me for that.