I have been reading some of your blogs tonight, and I have noticed a lot of you suffer from joint pain. I first went to my doctors in 2004 with painful joints, I was 24 years old, the pain was so bad in my wrist and ankles that I felt I could not support any weight. After going back to my doctors constantly complaining about the pain he sent me for blood test. After lots of blood test, and re-doing them over again they told me I had PBC.
My consultant at the time told me to go home and read up on it, not to worry to much as something will kill me before this (his words not mine) as you can imagine at 24 reading the information on the web site I was like you all, constantly in tears and not knowing who to talk to or where to turn. It was 2 years before I was seen again, and I asked that many questions but he just didn't know the answer or didn't really care.
I then contact Collette from PBC foundation and she told me to go to Queen Elizabeth's hospital and to see Professor Neuberger, my doctor contacted him and he seen me within 4 weeks. I was diagnosed with having the AMA in my bloods,
9 years on I am still symptom free I am please to say. I still suffer with joint pains, my GP says it is Hypermobility syndrom, and for the past 9 months I have been in a lot of pain with my right clavicle, finally they did a MRI and have now been told I have another rare condition called Osteitis Condensans clavicle. I am seeing a consultant on 19th to tell me more, I can't help think if they are all linked? Do i really have PBC as i currently have no symptoms?
I sometimes feel angry, finding out that I have PBC, if I never had those blood test I would of never known and I would of been care free.
Saying how I feel to you helps as I know we are all in the same boat just at different stages.
Hope you all stay as well as can be x