Re: Daughter's diagnosis

[Guest guest]

Hi Mark,

I have had horrible Upper right sid epain since 1994. I was

diagnosed with PSC in 2003, I think, it may have been 2005, anyway.

Fo the longest time the Dr's told me the pain was from IBS; however,

my PCP that I found in 2005 told me the pain was from PSC because of

the irritation to the bile ducts. FOr me taking opiates, often

increases the pain not to mention increasing the itching. I have

found a medication called Hycosamine helps my pain out a lot;

however, I have to take it as soon as the pain begins. It's a

sublinqual so it kicks in pretty fast. This is just my experience;

however, and may not work for others.

Dawn

>

>

> Also, is it possible that a great portion of the right side

abdominal pain

> that she has had over the last few years is attributable to PSC?

If so,

> with treatment, may she be able to lower her doses of pain

medication? That

> would certainly be wonderful!

>

>

>

> Thanks again,

>

> Mark

>

>

>

> From: [mailto:psc-

support ] On

> Behalf Of

> Sent: Monday, September 15, 2008 11:03 PM

> To:

> Subject: Re: Daughter's diagnosis

>

>

>

> Dear Mark;

>

> I am so sorry to hear about ne's diagnosis of PSC, but glad

that

> you found us. Yes, it's very frightening to read about PSC. I was

in

> your shoes 5 years ago when my then 18 year-old son was diagnosed

> with PSC and UC. The future seemed so bleak. But looking back, he

has

> really had very few health problems in the last 5 years, and his

> liver function tests are now the best that they have been in 5

years.

> He's on a cocktail of drugs and supplements (Asacol,

ursodeoxycholic

> acid, rifampin, fish oils, vitamins and extra folic acid), and this

> combination seems to be helping [at least as assessed by improving

> liver function tests]. I can provide a rationale for why he is

taking

> each drug and supplement, but will defer that to another post if

you

> are interested. The main point is that 5 years ago we didn't have

> much hope, but here we are 5 years later, and his health is still

> very good. He graduated from college, and is now in his 2nd year at

> medical school (Indiana University) in the MD/PhD program.

>

> Five years ago, my wife and I were determined to do something

> positive for the PSC cause, and so we set about collecting the

> world's literature on PSC, IBD and autoimmune diseases. We now have

a

> collection of over 93,000 abstracts and 50,000 full papers. I dare

> say that this is one of the planet's best collections of PSC/IBD

> articles? It's a huge database that is constantly being added-to

and

> updated. I can't yet claim that we have found a cure, but there are

> certainly some interesting glimmers of hope ... and its these

> glimmers that keep me going on this project.

>

> We also got involved, along with many other members of this support

> group, in helping the PSC Partners Seeking a Cure foundation get

off

> the ground and running. The foundation has now had 4 conferences,

is

> getting to know all of the top PSC researchers world-wide, has

> contributed funds to support the North American STOPSC research

> initiative, and will soon begin to fund PSC research directly via

the

> PSC Partners Seeking a Cure grants program. All of this has been

made

> possible by dedicated individuals volunteering their time and

energy,

> and a network of their friends, colleagues and family members

> contributing dollars to support research. I have to conclude that

> this is very positive progress indeed.

>

> I would like to encourage ne and you to think about coming to

> the PSC Partners Seeking a Cure conference in Chicago next May.

> ne will meet several PSCers of her own age, sharing the same

> health issues and concerns. You will meet an incredible bunch of

> caregivers who can share valuable information and provide support.

>

> Diagnosis is a terrible time, for sure. But hang in there, keep

hope

> alive, and ask lots of questions. Someone will try to answer them.

>

> Best regards,

>

> Dave

> (father of (23); PSC 07/03; UC 08/03)

> www.psc-literature.org

> www.pscpartners.org

>