What to expect from the Mayo Clinic?

[Guest guest]

Hi everyone,

It has been awhile since I have written, but read the posts often. My

husband and I are thinking about getting a second opinion from the Mayo

Clinic for our 21 year old daughter . Can some of you who have

been through the experience tell us what we can expect. Will she have

to repeat the more invasive procedures such as a liver biopsy and ERCP?

Any input will be much appreciated. Thank you.

Cathy

[Guest guest]

For me, all they did was send over the liver biopsies to the Mayo

Clinic and they were able to give a second opinion. (Be sure your

insurance is willing to pay for it though, mine didn't)

-Nick

>

> Hi everyone,

> It has been awhile since I have written, but read the posts often. My

> husband and I are thinking about getting a second opinion from the Mayo

> Clinic for our 21 year old daughter . Can some of you who have

> been through the experience tell us what we can expect. Will she have

> to repeat the more invasive procedures such as a liver biopsy and ERCP?

> Any input will be much appreciated. Thank you.

> Cathy

>

[Guest guest]

In my experience, they'll do the right thing, whatever it needs to be. I was referred to Mayo (Rochester) from a Minneapolis hospital. I did NOT have a liver biopsy in either facility, but I did have an ERCP at Mayo since I was septic (cholangitis) at the time. I think it unlikely that you will have to undergo procedures that have already been done.

The easiest thing to do is ask them up front. They may not be able to guarantee, but they will give you an answer.

Arne

55 - UC 1977, PSC 2000

Alive and (mostly) well in Minnesota

________________________________

From: [mailto: ] On Behalf Of heathersbestmom

Hi everyone,

It has been awhile since I have written, but read the posts often. My

husband and I are thinking about getting a second opinion from the Mayo

Clinic for our 21 year old daughter . Can some of you who have

been through the experience tell us what we can expect. Will she have

to repeat the more invasive procedures such as a liver biopsy and ERCP?

Any input will be much appreciated. Thank you.

Cathy

[Guest guest]

It has been a while, 15 years, since I was there, but they didn't do a

liver biopsy. They did take about 12 vials of blood though. They also

did a bone density test. They check out everything.

Can some of you who have

> been through the experience tell us what we can expect.

[Guest guest]

Hi,

Never been to the Mayo, though I would like to go. Are they doing any trials with autoimmune suppresants?

Curious if anyone would know

Shaul

PCS - UCAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

Shaul, I have been in a trial for three years now. When I lived in Missouri my doc approached me about getting into the double blind high dosage Urso study thru the Mayo Clinic. Since it is double blind, I have no way of knowing what I am taking.......the real thing or just a placebo. It would sure be nice to know if they are making in headway in their research. from Oklahoma PSC/02CholangitisSuprt@... wrote: Hi, Never been to the Mayo, though I would like to go. Are they doing any trials with autoimmune suppresants? Curious if anyone would know Shaul PCS - UC AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

Get your own web address. Have a HUGE year through Yahoo! Small Business.

[Guest guest]

:

Thank you for response. How are you feeling on the trial?

Thanks,

Shaul,

UC PSCAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

Shaul, That is kind of a tough question to answer. I have been in the trial for some time and hope I am getting the Urso but don't know. My PSC seems to have progressed within the last 3 or 4 months and I will be meeting with my doc in a few weeks to begin talking about tx. I just live each day at a time and thank God for each day He gives me. Thanks for asking. from OklahomaCholangitisSuprt@... wrote: : Thank you for response. How are you feeling on the trial? Thanks, Shaul, UC PSC AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

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