Re: (psc support) first signs and symptoms

[Guest guest]

Hi. First, I want to say welcome to the group. I'm so sorry you have to be

here, but really glad that you found us. Second, you have every right to be

scared and worried and good for you for not suppressing everything and for

wanting to talk about it! PSC can be scary. Sometimes it IS scary. It is NOT

a death sentence though and a lot of the information you find out there on the

web is just outdated or plain old wrong. So, I know it's difficult to do, but

when you find yourself panicking, try to take a deep breath and then come and

talk to us and we'll do our best to get you through this!

It sounds like you've been given/have found some scary information out there and

there are some scary things associated with PSC, but it's also not as dire as

some doctors/sites have you believe. Yes, transplant is something that most PSC

patients face, but not all of us do. Also, there are several members of this

board, I believe, who have had this disease for well over a decade and still

have not needed a transplant. Some PSCers develop symptoms immediately and

others don't. PSC can be rather different in every PSC patient. I think it's

one of the things that makes it so frustrating to have and for our doctors to

figure out.

You asked what were the first symptoms some of us started having. Most PSCers,

myself included, suffer with some form of itching (the feet and legs are common

places for it, but it can really attack anywhere on your body), right upper

quadrant pain - which I sort of describe as a feeling like a really heavy,

prickly brick is lodged up under your ribs (or sometimes it feels more like a

really heavy, full water balloon), and fatigue/exhaustion. This isn't just a

physical tiredness, it's a physical, emotional, mental kind of fatigue that

really is like nothing I'd ever felt before. Some PSCers also experience nausea

and vomiting and jaundice (yellowing of the skin). For me, I had severe

itching, nausea and vomiting. I had lost over 30 lbs without trying and caught

every cold/flu, etc. that was going around and just couldn't seem to get well. I

couldn't even make it through the day without a nap and 7:00 p.m. might as well

have been 4:00 a.m. When I

finally found a decent doctor (after many, many attempts), she found that my

liver levels were 10x the normal and things just started rolling from there.

There are some " sister " diseases to PSC and UC is one of them. It's not

uncommon to find PSC patients with some form of IBS such as Crohns and/or UC.

We also tend to be, from what I understand, a bit prone to other autoimmune

diseases (but somebody correct me on that if I'm wrong, please!).

You mentioned that your doctor doesn't want to discuss your fears with you.

Would it be possible to find another doctor? It really is important, if at all

possible, to find a doctor (generally a hepatologist or GI) who is familiar with

PSC. Even if that doesn't prove possible, I would encourage you to find a

doctor who makes you feel as though it's okay to speak your mind and express

your concerns. Your doctor really does need to be your teammate and you

shouldn't have to censor yourself around them.

I saw in your post that you mentioned that you were 32. I don't know if you're

aware of this yet, but we do have a Facebook PSC Support Group geared towards

those in their 20s and 30s and around those ages that works much like this site.

We do have some young mothers on our PSC FB group as well. If you're interested,

you're more than welcome to join us there as well. To do this, you would just

need a Facebook account. It's free. Once you have a Facebook account, you

could just search PSC Partners Seeking a Cure and our group should pop right up.

You can also contact me (Sandi Pearlman) and I can direct you to the link if

that is easier. On the PSC FB site, we offer each other support, ask questions,

give answers, etc. It's a nice supplement to this site.

I hope I've helped put your mind at least a bit at ease! Please do feel free to

ask any questions that you may have or share any stories along the way. That's

what we're here for! One of the things that is so amazing about this site and

this group of people is that between us, we really have seen it all (or at least

close to it). So, chances are, if you're suffering with something, someone else

in this group has, too. Last, I don't know if you'll be able to make it or if

you'd want to consider it until you have an official diagnosis, but we do have

an upcoming PSC conference in Chicago this year May 1-3rd. It's a great place

to meet other PSCers, ask questions, get answers and hear from leading

researchers and doctors in the field. If you'd like more information about it,

you can either contact me or go to www.pscpartners.org. I really can't

recommend the conference enough for educational, social and peace of mind

purposes!

I hope this e-mail helped at least a little!

Best of luck to you!

Sandi in VA/Rochester

[Guest guest]

Hello up there in scotland. I live jus outside of Canterbury in the south east

of england. When i was 17 i had the worse pain ever, childbrith was easier! went

to docs who thought at first it was gullstones. Didnt get anybetter and started

being sick every hr went into hosp - anyway long story short i had liver blood

numbers all v.high and yes now looking back i was always tired. I had a

colonoscopy showed UC - have you been tested for any these? bout 2years later

thanks to new fab gastro i got dx with PSC (as my liver numbers had neva got

back to normal).

As far as everyday symptoms go i have upper right pain, fatigue, and itching. As

everyone else has said we all react to this disease in dif ways. but it is

really important to have a good team of docs. They're like the machanic to your

car - without them being good at their job you the car will start to go dwn

hill.

The fear of future can be overwhelming esp when you have a young family, i am

blessed with a 4yr old daughter. and the thoughts i have sometimes are enough to

put my in a dark hole. however i do take extreme comfort in this group and live

each day at a time and try to focus on the great things i do have like my

daughter and partner.

Hopefully you'll find out some more concrete news soon and we're all here for

you,

best wishes

[Guest guest]

>

> Hello up there in scotland. I live jus outside of Canterbury in the south east

of england. When i was 17 i had the worse pain ever, childbrith was easier! went

to docs who thought at first it was gullstones. Didnt get anybetter and started

being sick every hr went into hosp - anyway long story short i had liver blood

numbers all v.high and yes now looking back i was always tired. I had a

colonoscopy showed UC - have you been tested for any these? bout 2years later

thanks to new fab gastro i got dx with PSC (as my liver numbers had neva got

back to normal).

>

> As far as everyday symptoms go i have upper right pain, fatigue, and itching.

As everyone else has said we all react to this disease in dif ways. but it is

really important to have a good team of docs. They're like the machanic to your

car - without them being good at their job you the car will start to go dwn

hill.

>

> The fear of future can be overwhelming esp whsen you have aa young family, i

am blessed with a 4yr old daught er. and the thoughts i havoe sometimes are

enough to put my in a dark hole. however i do take extretme comfort in thi s

group andt live each day at a time and try to focus oon the great things i do

have like my daughter and partner.

> Hopefully you'll gfind out some more concrrete news soon and we're all heore

for you,

> best wishes

>

>

did you have UC symptoms? forgot to ask that, i had strange bowels for 2weeks,

not loose but tiny amount of blood and mucus on formed 1 a day stools i dont

think it is UC but dr said may be sorry if too much info, but then it went away

and not had blood or anything since. sorry to be a pain with questions but dont

know where else to turn, dr doesnt seem t know much,x

f

[Guest guest]

Hi ya, you can contact me direct on rach8684@... if you'd like if not

there is a uk based support group - http://www..demon.co.uk/.

they have an annual meeting on the 1st Aug in Oxford. my plans at the mo are to

attend but we'll see for def nearer the time.

I can share your fear - mines mostly sits on the side of my partner and

daughter. But as i said this group is jus amazing and really brings me some

comfort when i'm having those scary days.

best wishes