Re: *Chaim* Re: A new member with some questions :)

[Guest guest]

 

Hi Chaim,

Yes I am the one who wrote you some weeks ago, but somehow I haven't received

your reply. (I'm new to Yahoo mail, so maybe I missed it somehow).

I believe we live in neighboring cities, and would really like to talk to you

and also would be happy to recieve the hebrew translation of the brochure.

You can mail me at lironli@... 

 

I don't know anything about the Israeli liver foundation, and would be happy to

learn more.

Tor Caspa is my new doctor (He's the one who sent me to the MRCP), and although

I've only met with him twice, I feel very comfortable trusting him. He seems

extremely professional and also seems like a nice person, which is definitely a

bonus

I don't think I will get a second opinion, since it seems that my MRI was very

indicative, and although my family doc offered I'd get a second opinion with

Shoval, I think I trust Tor Caspa enough, and should just let myself get used to

the idea that I do have a chronic disease which I'll have to learn to live with.

I'm actually a very optimistic person, and although I'm sure things won't be

easy down the road, I'll sure try to make the most out of the relatively

symptom-free time I have right now, and hopefuly will have for more years to

come. I know that this disease is individual, and we can't predict its progress,

so all I can do is hope for the best, learn more about what I can do for my

health meanwhile, and mainly enjoy every moment I have with my family. I've

never taken anything for granted, but getting this diagnosis sure helps to put

things even more in perspective...

I will call you soon, and will be happy to know you and your wife and also learn

some more about PSC.

Liron.

 

 

 

 

Subject: Re: A new member with some questions

To:

Date: Friday, May 30, 2008, 4:13 AM

Shalom Liron,

My name is Chaim, and I am also from Israel. I am sorry that you

needed to go look for us (diagnosis with PSC), but I am happy you

found us. I have learned a lot since I joined this group about two

years ago. My wife and I are active members of the Israeli liver

foundation, and we would be happy to help you in any way we can.

Are you the same person I wrote to a few weeks ago who said we were

neighbors?

If not, my wife and I translated the PSC support brochure in hebrew

and it includes a list of some very knowledgeable doctors in Israel.

For the Jerusalem area I would advise prof. Shoval (or his

replacement, I think he is on sabatical), for the Tel Aviv area Prof.

Tor-Caspa, and for the Haifa area prof. Zuckerman (who is my

hepatologist) for a second opinion. I have to admit though that your

story sounds very much like mine, and I do have PSC without any

doubt, the only part I can't identify with is the pregnant part ;-)

My phone number: 054-2228559

My wife's (Ellen) phone number: 054-4693689

Let us know if you need anything.

If you want to contact me

>

> Hi,

> My name is Liron and I'm from Israel.

> I'm 27, and recently diagnosed with PSC, after 5 years of

> mysteriously elevated LFTs.

> I was actually a bit shocked when PSC was declared, since my LFTs

> went up and down in the last few years, but were sometimes within

> the normal range, and the liver biopsy I did two years ago showed

> absolutely no sign of any problem. I also don't currently have any

> other diseases.

> Actually, my first hepatologist told me that since the liver biopsy

> was normal, I probably don't have anything serious, and I'm just

one

> of those 10% who will never know why their LFTs are elevated...

> Well, obviously he was wrong, and after being pregnant and having

my

> LFTs dropping down to the bottom of the normal range, only to fly

> high again as soon as I gave birth, I realized I need to see

another

> hep. (It was then suggested by some docs that it may be an

> autoimmune disease, because I was " cured " while I was pregnant)

> So I was finally sent to a MRCP, and aparently there was no room

for

> an error, and it unfortunately showed a spreaded bead-like

> appearance throughout my bile ducts.

> I'm currently taking 1500 a day of Urso, and hoping for the best.

> We had a rough year, with our baby being born with another rare

> disease (although his was fortunately treatable, and he's doing

> great now), and then just when we finished most of his medical care

> - well, life isn't always easy, I guess

>

> So that's just a little bit about me, and since I've been reading

> the group's messages for a few weeks now, and seeing how

> knowledgeable and supportive the people here are, I'd like to share

> a few questions:

>

> 1. When I was sent to the MRCP, my primary care doc told me there's

> no need to do this test, because since I don't have UC or Crohn's,

> and my antibodies tests returned negative, there's no way I can

have

> PSC.

> Well I know she was wrong, but some other docs I talked to also

> don't understand how I can have a normal liver biopsy and no other

> diseases or antibodies, and still have such a definite and not so

> reassuring MRCP, showing a spreaded picture throughout the bile

> ducts. Is it common? Is there any room for a second opinion? I

don't

> feel there should be any, since I really trust my hepatologist and

> his broad experience, and he also had several docs study my MRCP

> results. What do you think?

>

> 2. Since starting Urso I started having RUQ pain from time to time.

> It's not very painful, and it goes away, but it's definitely there

> almost every other day. Is it normal? It wasn't there before I

> started taking Urso...

>

> 3. Around the time my liver enzymes started to elevate, about 5

> years ago, I suddenly started gaining tons of weight. I gained 20

> kilograms in 3 months, and I was a really skinny person before. I

> still can't seem to lose this weight, and I really try. None of the

> docs I visited know why this happened and is happening. I know for

> sure that it was at the same time my liver enzymes started to go

> crazy. Has anyone had something similar? Docs think that everything

> has to be related, but can't explain how.

>

> Thanks a lot and sorry for the length,

> Liron

>