Diagnosed 9 yrs ago

[Fudger126]

Hi,

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

[judyt]

Hi,

I have Scleroderma, Sjogrens and PBC. I know I have had Sclero at least since I was 22 or maybe even younger. I suspect that the PBC was starting then too just because I have never been able to tolerate alcohol very well. I would get sick really easily after a few drinks. I am now almost 70 and although I have had deranged liver function for the last 10 years I was otherwise symptom free and in fact still would be unaware, A year ago I had an emergency abdominal surgery and some cirrhosis was found at that time. Since then I have had a biopsy to confirm the PBC and as far as I am concerned I am still symptom free. I still wouldn't know except for my blood test results etc. I am taking Urso now and have been for the last 6 months and that could be why I am still not noticing any difference. When one has Scleroderma there are lots of things going on and I sure do notice the effects of that . Sjogrens is noticeable too and I have medications and strategies to help deal with all of those things.

PBC has a very slow onset from what I have read so maybe you don't need to panic too much but get on with living to be best of your ability. Keep up with a good doctor and do what is suggested to help yourself.

Best wishes

[Maggs3petts]

That's true we're in the same boat and you can write about how you feel to us as we understand. When I was diagnosed my Consultant was very good and explained it all tome. Being honest, it was me that didn't take seriously because I already had arthritis ; asthma; depression; fibromyalgia; insomnia; migraine; raynauds; scleroderma; and sciatica. It was when I got in touch with the PBC I was able to get the info I needed. The 'Living with PBC', manual helped me too. I lent it to my GP for a wee while for him to read up on he was honest enough to admit he didn't know very much about PBC. I was diagnosed in July 2007 and my sister was diagnosed with it a few months later. We're the only two in our GP Practice with it. I've since been diagnosed with hiatius herna and just last week my Consultant informed me I'm anaemic. I've got an appt for 1st May to see a Haematologist. So hoping he can help. All the best.

[mumofthree]

Its so cruel that you have had and are having these problems at such a young age. I was diagnosed with PBC 2 years ago at 50.

I started having severe joint pain at the age of 38, 10 weeks after giving birth to my 3rd child. My hands, wrists, arms were so bad I couldn't pick my baby up. I could hardly walk because of the pain in my feet, ankles and legs. The only way I could get up and down the stairs was either with the help of my husband or by crawling up on my hands and knees and on my bottom on the way down.

My GP thought I could possibly be suffering with viral arthritis and referrred me to a rheumatologist. It took 3 years for that referral appointment to come through, every time I enquired about it I was fobbed off with excuses and told I was not an urgent case and would get my appointment when I got to the top of the waiting list. During the 3 year wait I self medicated pain relief, adapted they way I did things and just learned to live with the pain. My appointment lasted 15 minutes and was a complete waste of time. I was basically told I did not have arthritis and when I asked why I was in pain he said try and lose some weight....I was 11 stone and 5ft 6ins at the time so hardly obese and when the problems first started I was just 9 stone. I lost faith in the medical profession after that and continued as before self medicating.

I went back to my GP in Aug 2009 out of pure desperation, my pain had become totally out of control. I was once again referred to a rheumatologist querying rheumatoid arthritis. By December 2009 I had had my appointment with the consultant all the tests ordered... numerous blood tests, xrays, utra sound scan and an MRI and given a follow up appointment date for Jan 2010. That appontment was cancelled over and over again, excuse after excuse. Then in May/June 2010 I had a letter from the Gastroenterology Dept confirming receipt of a referral request and advising that I would be sent an appointment date in due course. I thought there had been a mistake and when I rang them to enquire they told me they had received the referral from the rheumo dept and to contact them. Rheumo confirmed over the phone they had referred me to gastro to check out the results of the blood tests that I had done.

My appointment with gastro came in Oct/Nov 2010 and my experience with the gastro registrar was much like yours. I had gone there on my own still thinking there was some sort of mistake because as far as I was concerned..I did not have anything wrong with my stomach... My only symptoms were joint, bone and muscle pain and feeling very tired (fatigue).The registrar told me the blood tests had shown up that I had PBC and I needed a biopsy to confirm the extent of the damage. He said it in such a way as expecting me to know what he was talking about. When I asked him what it was and what effect it would have on my health he told me it was an incurable auto immune condition affecting the liver and the worst case scenario was that I could have 3 years... I was absolutely devestated all I could think about was that I would not see my children grow up..the youngest was then nearly 10. He gave me a copy of a GP leaflet on PBC and told me to look it up on the internet.

My sister accompanied me to my follow up appointment in Jan 2011, after I had undergone the biopsy and other tests. I saw the consultant that time who confirmed the PBC diagnosis and when my sister explained to him... I couldn't speak because I was so upset.... what had been said in my previous...he was excellent and took the time to explain everything to me and put my mind at rest. He told me that he would give me medication (URSO) which would slow down the progression of the condition....that it may never turn in to cirrhosis but if it did there was the opportunity of transplant....I had a life to live and by making small changes he saw no reason why I should not go on to lead as normal a life as any one else.

As far as having symptoms, as previously stated mine are joint, bone, muscle pain and fatigue. Some suffer with itching among other symptoms. Some have an overlap of other auto-immune conditions which bring their own symptoms. Then there are those who do not have any symptoms at all..I believe it is called asymptomatic but may be wrong. You do have other conditions so they may well be linked and your consultant should be able to confirm/deny this.

I agree this site is great for letting all your feelings out because after all we are all in the same boat.

Be positive and stay well.