First group pbc meeting, london

[Twinkle26]

Hi I attended my first London meeting yesterday, and it was nice to see so many people with pbc, this sounds strange to say, but you know what I mean lol.

I did have a chat with a couple of people, but I'm not the type to get up and make myself heard, so I sat listening to a lot of people, it was like a big coffee morning but in the pm.

It was really nice to learn of many people surviving it for years and years, and to meet Linda from pbc foundation, who came all the way from Scotland, I didn't get to chat to her much but she did give me a little advice-( my fingers & toes were feeling the cold a lot more than usual) so thank you, I will look into that advise.

Thanks to Goksel for sorting the meeting.

I didn't know what to expect. And in the morning really didn't want to go out but I'm glad I made the effort to kick myself out the door. I was really tired after I got home but I'm looking forward to the next one and will try talking to more people.

[Dese]

Hi I didn't know about the meetings I live in Essex so if you don't mind letting me know when the next one is please. Sounds really interesting glad you enjoyed it and I hope you got some of the answers you was looking for.

[Twinkle26 in reply to Dese]

There are meetings around your area I'm sure, but I will post on here for the next one it may be every two months.

[Dese in reply to Twinkle26]

Ok thanks and il found out if there's any in my area

[Mary48 in reply to Twinkle26]

No, essex doesn't have meetings organised.

[Twinkle26 in reply to Mary48]

Phone pbc foundation I'm sure they will advise you on what's available to you locally or as close as possible. Look n the bear facts mag too online for Nov/ Dec and they have list of meetings available at the moment.

[PBCFoundation PBC Foundation in reply to Dese]

Good morning Dese,

Can i ask if you have already registered with the PBC Foundation? If you have would you like to send us your name and address privately and we can check on our data base your details are correct or alternatively you can contact our office on 0131 556 6811 or email, [e-mail]

Our primary method of informing our registered users of upcoming events and meetings is in our quarterly magazine The Bear Facts which all our registered users receive either electronically or by mail.

Best wishes

PBC Foundation

[Dese in reply to PBCFoundation]

Good morning I think am already registered with you. It's just there's lots of things I don't know about this illness, I look on here for some help sometimes.

[Rockie]

Hi Twinkle 26 I am so glad you went to the meeting. I so wish in South Africa there was such a group. Here you feel so isolated, as nobody really understands the condition, even the doctors I go to.

[Twinkle26 in reply to Rockie]

Hi is there any way you could ask your dr to pass your details to other pbc sufferers in your area? It's worth asking.

Good luck.

[Rockie in reply to Twinkle26]

Hi Twinkle 26. In my area, one of the best specialists told me that I am his 2nd patient in over 25 years of practice, with PBC, so he could not help me

[Twinkle26 in reply to Rockie]

Well rockie, you have all of us on here x

[PBCFoundation PBC Foundation in reply to Rockie]

Hello Rockie,

If you ever want to chat, please remember we are always here to listen at the Foundation.

We don't want anyone to feel isolated. We understand there is a time difference so if it is easier, we can arrange a Skype call if you have that facility or email, whichever suits you Rockie.

We will send you these contact details for you.

Best wishes

PBC Foundation

[Rockie in reply to PBCFoundation]

Sorry, I have not access to Skype. Thanks for your concern

[Juamcc]

The price of ursodiol has risen at least 3 times due to one company buying out other providers in the USA! The company stock rose 15 % Wednesday when the US stock market was falling falling falling. I have to take three a day and I will be in the donut hole by middle of May. If you have a voice let it be heard that it will bankrupt Medicare and people who must have this particular medication. That means every PBC person in the United States!

Juanita Mccracken

[e-mail]

[Mary48]

I have cold hands and feet most of the time, is it alright to share the advice. Specially this time of year.

[Twinkle26 in reply to Mary48]

Oh sorry Linda sad for me to see the dr to see if it's chilblains. I didn't ask any more it was just there to remember.

[Jackie71]

I am also in Essex so would possibly have attended had I known, you do feel as though you are on your own much of the time even though we have this site which is wonderful.

[Twinkle26 in reply to Jackie71]

I don't know the date of the next meeting but was implied it would be by monthly, they are trying to sort out where to have the next one as quite a lot showed up and the coffee area was swamped, if you contact pbc foundation to see if anything more closer to you both in Essex, if not I will wait to see when the next one is and ask if I Can post it here or if the foundation lets you know as I'm not organising it.

Xx

[Twinkle26 in reply to Jackie71]

Hi again just to say I found out about the meeting through bear facts mag in the meetings page, available online, Goksel Osman organised the meeting her details are on there. Hope this helps.

X

[PBCFoundation PBC Foundation in reply to Jackie71]

Good morning Jackie71,

Can i ask if you have registered with the PBC Foundation already? If not, then it is free and easy to join by visitng our website and following the instructions or alternatively, you can call the office on 0131 556 6811 and we can send a pack out to you.

All our Self-Management sessions and support meetings by our Regional Volunteers are listed in our quarterly magazine, The Bear Facts which every registered service user should receive either electronically or by mail.

If you have registered Jackie and you haven't received these, if you would like to send us your name and contact details privately, we can chack them on our data base for you.

Best wishes

PBC Foundation

[Laurels]

Glad you came along to the meeting on Saturday and benefited from meeting other PBC sufferers. Judging by the number of people who attended there definitely is a need for a group in London. Will try and schedule the next meeting for end of March. Linda will notify everyone in the London area. I can also post it on this website. Anyone wanting to attend the meeting can get in touch with me, my number is listed in the Bear Facts.

Goksel

[DrDizzy]

Hi Twinkle,

It's lovely that you have such a great support group. I live in Mexico and haven't yet found any other PBCers.

You mention cold hands and feet. I suffer a lot from cold feet. Case in point, the temp. today is about 11°. I'm wearing fur lined boots with wool insoles and thick socks and my feet are like ice.

Is that PBC related?

[Twinkle26 in reply to DrDizzy]

Hi the dr I spoke to said the fingers and cold toes could be reinards or rheumatoid arthritis, see your GP and get answers. Good luck.

[Twinkle26]

Hi dr dizzy, I really don't know but I'm having the same problem so when I get an answer I will let you know xx