Hi

[Guest guest]

HI Carol! I have been feeling very good lately. We are going for another U/S

on Nov 5th and are hoping to find out what we are having. Will be very

interesting! My youngest hasn't said either way wether or not she still

believes in Santa but we always told my oldest that the day she admits that she

doesn't belive, he quits coming They will have to play along for a long time

yet! LOL

in MI

Re: HI

--

Hey, missed you lately. How are you feeling?? 20 weeks, wow!! Who

can believe it? It seems like just yesterday I was reading of all

your ups and downs of ttc. Do you know what you are having?? Boy or

girl?? I am so happy for you.

I am not happy about the snow, though. I am lower Michigan. So I

can expect what you get in a couple weeks usually. Although, lately

it has looked like snow clouds quite a few times. I keep telling my

kids, pretty soon it will be time for Santa. My DD8 doesn't believe

anymore(boohoo), and my DS5 believes wholeheartedly(Yeah!!!!!!!!)..He

has written his name next to almost every toy in the JCPenney gift

catalog.LOL. He is so excited. Veggie Tales has come out with a new

video. The star of Christmas. I think that's the name of it. I am

going to get it for him this weekend. His sister is already pumping

him up with watching Rudolph and Frosty. It is going to be a long

fall.......til Santa comes anyway.

Congrats again on the baby. I am happy you are doing well. Keep us

posted.

God Bless

Carol Maday

[Guest guest]

Im a 62 yr old male living nr Newcastle upon Tyne I was DX about 3/4

yrs ago with having PSC but I was not told that it was PSC I was

told it was an Auto-imune Desease

I was put on URSO and other creams which were no good to me my

worst symptom is the itch it is always there but there are times

when it is unbearable. I am now on a drug called NALTREXZONE 50mg I

take up to 3 tablets per day but I was told by the hospital not to

take more than 2 per day but I need the third just to keep on top of the

itch. The other thing is the the extreme tirdness that comes over me I

feel sometimes that I could just drop down on the floor just to rest

it seems to come over so suddenly.I have no engergy at all and I

soon tire when I try to do things .

Do you have any advice on what sort of questions I should be asking

the hospital about my condition etc.

I hope you do not mind me contacting this way but I feel so down and

irritable my wife is at her wits end with all this.

all the best

Ron

Hi Ron,

So sorry you have are feeling so low at the moment, itching and fatigue (i.e. utterly exhausted I'd call it)! are the 2 main problems PSC patients suffer from so you are not alone. I'm glad the naltrexone is helping a bit. With your fatigue problems are you still working or are you retired? I had to retire in 1993 because I couldn't concentrate on my work and I felt so exhausted as well. The main things that can help you is to pace yourself with small frequent meals then rest for 1/2 to 1 hour and then a couple of hours activity. I found eating a low fat diet which was high in carbohydrates helpful for itching and fatigue. Stress too can be a real pain as this whole disease process is stressful!! Always feel free to speak forth comments, questions and worries onto this group. There is around 400 members so they will always be someone who will have 'been there, done that'.

Have you looked on the psc support group websites? the UK one is >http://www..demon.co.uk/oxford/oxford.html <

This groups website has all the main question people ask so you'll find that helpful too.

Don't feel too disheartened about your condition, some members (myself included) have had PSC for many years and being able to lead a reasonable life. Just remember to pace yourself as suggested and I hope you'll find that helps you.

If you want to ask any other questions do go ahead, I'll look out for you!

Barbara (UK)