Is there anyone on here from Eccles in manc... - PBC Foundation
Is there anyone on here from Eccles in manchester who attends the support group at the manchester royal each month
Hi Lainey67, I don't go to the support groups but I live in Middleton, I could go to the Stockport support groups however i work full time and the are always during work hrs. Plus I feel daft going as I am managing my PBC and I know so many are struggling, I would feel a fraud I think or others may think what am I doing there.
Hi Fudger sorry it has taken so long to reply,i haven't been on here for a while.How long have you had pbc i got diagnosed a year ago i am still very scared for the future,i think that is why i need to meet and talk to others with this disease,i still haven't been to a meeting as yet.
Hi Lainey67, I got told I had PBC when I was 24, so it has been 9 years. I went to the doctors with joint pains and after number of test they found the AMA antibody in my bloods. However in the past 9 years nothing as changed, I see a specialist every year. I worry about it still all the time, if anything changes within myself I think it could be the PBC. How did you find out? What symptoms do you have? Are u taking Urso? I know sometimes it can be scary but on here it's good that everyone knows how u are feeling. Take care xx
That is very young to be diagnosed its not fair, same as you i have very bad joint and muscle pain i have had this for over ten years and they still dont know what is causing it.I was diagnosed a year ago i have a very good GP who knew that i was feeling very tired all the time so he done some blood tests.At first they thought it was my pancreas because i had an enlarged lymp node,i have never been so scared i thought i had cancer at first the consultant said that they see this in our condition.Do you suffer with the fatigue,it is really getting me down at the mo mine seams to be getting worse i hope that dosent mean that i am progressing.I am due to see the consultant on friday i dread it.Urso seems to be working for me as lfts started to improve straight away,did they improve quickly for you.
I am not on any medication, they had diagnosed me for having the AMA in my bloods. The first few years was the scariest as I had consultants that new nothing about it. Also after my first scan I was told I had scaring, which turned out not to be, thank god.
Where is your consultant? I go to Birmingham once a year queen Elizabeth, they are fantastic professor Newburge took me on straight away, and gave me the correct info. I have had a tough year so far, always tired, clavicle joint pain and I have been depressed but I think it was due to pain. Have u tried any supplements? When I was feeling down I felt more tiered. Maybe when u see the consultant you will feel better, I always did. I feel I am waiting for them to tell me it has gone worse.
Hope Friday goes well, let me know how you get on xx
It sounds like we have alot in common i to am very depressed i still wake up with anxiety,i am scared to death to go friday.I am under a Dr Prince from Manchester Royal i have only seen him once,i was under a doctor called Dr Babs from Salford Royal until he frightend me to death.He was a nice guy i just think it was the way in which they diagnosed me.At first he said it was my liver so i had an ultrasound which showed my liver kidney and spleen to be ok it showed a polyp in the gallblader and what he called slight prominence of the pancrease.He then gave me an mri which showed a raised lymph node in the pancreas,he said that they see this in pbc even thoe no one else seems to of had it.He asked a cancer nurse to ring me to go and see her for diagnosis well this just sent me into a panick attack as she said we would like to send you for a ct scan to aliminate any other diseases,i just ran out of the hospital frightend to death thinking i might have cancer.I know a lady from liver north who said try the consultant i am with now so i changed hospitals.I just hope when i see him on friday he dosen't want to do a ct scan.I am scared they will find something else.Do you go to pysio for your pains i went on monday and now im in more pain than before.What i dont understand is i was told that i was early stage disease so how can you feel so ill perhaps alot of it is nerves i would like to try yoga to see if that would help.
Physio has never worked for me. I think because it is an immune condition we will have other issues. Try not to worry to much, u are in the best hands now, u have found out what u have and they are treating it with Urso. Maybe after Friday u will feel better. I had a MRI as well, they are talking about a biopsy now, but they are holding off. How old are u if u don't mind me asking? With u being tiered and a little depressed have u tried little excersise? I try doing it 3/4 times a week, it makes me feel better when tiered or down. Doctors now more about PBC now when I found out I new more then them. The consultant told me to have children then if I wanted them so I could see them grow up!! That scared me but it is no longer the case. Live each day as it comes! Try and pick yourself up, you will be fine, I know it's scary but they will look after u. Xxx I'm thinking about u, but u will be ok, let the consultant do what he needs to do to check all possibilities. I'm here if u want to talk. X
Thank you Fudger i am 46 and feeling 100 lol i do alot of walking and im starting swimming next week.I have alot of people to look after so i am on my feet alot i dont know if this contributes to the fatigue funny thing is when i was in wales on holiday the fatigue was there but i managed it alot better and didn't sleep in the day,as soon as i got home it got worse so i wonder if some times it can be made worse by mood.Thank you for all your kind words it is so nice to find some one who understand how you feel,i think my familly forget that i have pbc xxx
Mine are the same Hun, maybe you need to take time for you more. I should do the same sometimes. Hope Friday goes well, please let me know what happens I will be thinking about you. Xx
Thank's Fudger i will be asking more questions at this app.He is very clued up on pbc and has wrote a book.Thank's again and take care xx
How have you got on today Lainey67?
Hi Fudger my app was cancelled till mon.My gp done bloods for me on wed so i could take results with me on mon,i am chuffed with the results i dont know what is normal for us but mine have come right down.July last yr they read GGT 390, ALK PHO was 279 and bilirubin was 8.Now my ALK is 112 my GGT is 44 and bilirubin is 6 so i am very happy.I have 2 gps the one i saw today is not as clued up on pbc,i had to laugh he rekons my pbc may of gone because of my results eand that my fatigue is due to depression and has nothing to do with pbc,i sat there for 10 min trying to explain how pbc works.It is so frustrating i am the 3rd patient they have with the condition you would think they would know more.He rekons you only get fatique when the disease is servere.How are you ok i hope xx
That's great news with the blood results Hun. It's a shame your consultant appointment cancelled, but at least your going on Monday. You could be more tired with being depressed I know I did. I'm ok thank you, stressed with work but that is normal. Well have a nice weekend and relax now that u have those fantastic results. Let me know how u get on. Xx
Thank you i wil,im glad your ok have a great weekend xx
How did u get on at the hospital? X
hi fudger it went well my liver functions are all back to normal and liver is doing ok.I have a polyp in the gall bladder which he said they wont touch as it is only 5mm and they will only take it out if it is 2cm so that is good i now have sjgons and he thinks i may have coelic so he tested me for that he said they are not serious but when i read up on them it scared me as it said people with sjgones can develop lymphoma so now i am worrying about that.I dont have to go back for a yr.I hope you are keeping well xx
Or maybe others would find you an inspiration. We all need to hear good news sometimes.
Does any one suffer with sjgens and coelic disease as consultant said it is nothing to worry about but i have just read that it can be serious
