What questions should I ask

[Guest guest]

Hi everyone;

On Monday I am scheduled to see a " specialist " in PSC. I have

diagnosed with PSC on and off since 2005 and have had symptoms since

1994. This will be the first " specialist " that my physician has been

able to find for me to see and I am wondering if you all can help m

eto be prepared for this appointment and what questions I should

ask. I am taking over 70 pages of medical tests including 2 biopsies

and the films from an MRCP from 2007. What else should I take and

what questions should I ask so that I can find out everything that I

should find out. I want to thank you all for you help and for

sharing your knowledge. The information that I have gained thus far

from this site has answered so many of my questions and helped me to

feel that I am not insane, which is how I have felt because many of

the dr.'s have told me that my symptoms have been somatic. Ha you

all have the same symptoms. Any I would be gratefule for any

suggestions so that I can have a productive meeting on Monday.

Thanks

Dawn

[Guest guest]

Dawn,

Two items you might want to cover are the hepatitis vaccines A and B and a bone

density scan......unless, of course, you've already had them done.

Tarheel Tim

[Guest guest]

Thanks. My last DEXA scan was okay though it was over 2 years ago.

Also I have had the Hep B vaccine twice and I won't build antibodies

for Hep B so my Dr. doesn't think A will work either. Has anyone else

had this problem?

Thanks again

Dawn

>

> Dawn,

>

> Two items you might want to cover are the hepatitis vaccines A and B

and a bone density scan......unless, of course, you've already had them

done.

>

> Tarheel Tim

>

[Guest guest]

Thanks. My last DEXA scan was okay though it was over 2 years ago.

Also I have had the Hep B vaccine twice and I won't build antibodies

for Hep B so my Dr. doesn't think A will work either. Has anyone else

had this problem?

Thanks again

Dawn

>

> Dawn,

>

> Two items you might want to cover are the hepatitis vaccines A and B

and a bone density scan......unless, of course, you've already had them

done.

>

> Tarheel Tim

>

[Guest guest]

Thanks. My last DEXA scan was okay though it was over 2 years ago.

Also I have had the Hep B vaccine twice and I won't build antibodies

for Hep B so my Dr. doesn't think A will work either. Has anyone else

had this problem?

Thanks again

Dawn

>

> Dawn,

>

> Two items you might want to cover are the hepatitis vaccines A and B

and a bone density scan......unless, of course, you've already had them

done.

>

> Tarheel Tim

>

[Guest guest]

Our dr. dr kowdly who works with lindor at mayo said they don't do bone

density test anymore.

ask how often you should get blood work done. check vitamins a, b, k

with blood test it is very important to take vitamin supplements.

it is great that you are seeing a specialist. good luck -rachel

>

> Hi everyone;

>

> On Monday I am scheduled to see a " specialist " in PSC. I have

> diagnosed with PSC on and off since 2005 and have had symptoms since

> 1994. This will be the first " specialist " that my physician has been

> able to find for me to see and I am wondering if you all can help m

> eto be prepared for this appointment and what questions I should

> ask. I am taking over 70 pages of medical tests including 2 biopsies

> and the films from an MRCP from 2007. What else should I take and

> what questions should I ask so that I can find out everything that I

> should find out. I want to thank you all for you help and for

> sharing your knowledge. The information that I have gained thus far

> from this site has answered so many of my questions and helped me to

> feel that I am not insane, which is how I have felt because many of

> the dr.'s have told me that my symptoms have been somatic. Ha you

> all have the same symptoms. Any I would be gratefule for any

> suggestions so that I can have a productive meeting on Monday.

>

> Thanks

>

> Dawn

>

[Guest guest]

I've never developed antibodies to Hep B either. Marie

To: From: mdwblaze@...Date: Tue, 9 Sep 2008 17:27:20 +0000Subject: Re: What questions should I ask

Thanks. My last DEXA scan was okay though it was over 2 years ago.

Also I have had the Hep B vaccine twice and I won't build antibodies

for Hep B so my Dr. doesn't think A will work either. Has anyone else

had this problem?

Thanks again

Dawn

>

> Dawn,

>

> Two items you might want to cover are the hepatitis vaccines A and B

and a bone density scan......unless, of course, you've already had them

done.

>

> Tarheel Tim

>

See how Windows connects the people, information, and fun that are part of your life. See Now

[Guest guest]

I've never developed antibodies to Hep B either. Marie

To: From: mdwblaze@...Date: Tue, 9 Sep 2008 17:27:20 +0000Subject: Re: What questions should I ask

Thanks. My last DEXA scan was okay though it was over 2 years ago.

Also I have had the Hep B vaccine twice and I won't build antibodies

for Hep B so my Dr. doesn't think A will work either. Has anyone else

had this problem?

Thanks again

Dawn

>

> Dawn,

>

> Two items you might want to cover are the hepatitis vaccines A and B

and a bone density scan......unless, of course, you've already had them

done.

>

> Tarheel Tim

>

See how Windows connects the people, information, and fun that are part of your life. See Now

[Guest guest]

I've never developed antibodies to Hep B either. Marie

To: From: mdwblaze@...Date: Tue, 9 Sep 2008 17:27:20 +0000Subject: Re: What questions should I ask

Thanks. My last DEXA scan was okay though it was over 2 years ago.

Also I have had the Hep B vaccine twice and I won't build antibodies

for Hep B so my Dr. doesn't think A will work either. Has anyone else

had this problem?

Thanks again

Dawn

>

> Dawn,

>

> Two items you might want to cover are the hepatitis vaccines A and B

and a bone density scan......unless, of course, you've already had them

done.

>

> Tarheel Tim

>

See how Windows connects the people, information, and fun that are part of your life. See Now

[Guest guest]

A few suggestions for questions:1. Can I have a copy of my blood test results?2. Can I have a copy of my XXX (i.e. liver biopsy) result?3. Can you test for my fat soluble vitamin levels (A, D, K, E)?4. Can I have my blood drawn BEFORE I see you next time, so we can discuss the results?5. What stage is my PSC?6. What is my MELD score?7. What do you anticipate the timeframe/course of my PSC to be?8. How much Ursodiol should I be on?9. What is my CA-19-9 test result?10. How often will you do the ERCP test? Will you send brushings of cells from the bile ducts to the Mayo Clinic for FISH analysis?11. How often will you see me?Marie

To: From: mdwblaze@...Date: Tue, 9 Sep 2008 13:22:46 +0000Subject: What questions should I ask

Hi everyone;

On Monday I am scheduled to see a "specialist" in PSC. I have

diagnosed with PSC on and off since 2005 and have had symptoms since

1994. This will be the first "specialist" that my physician has been

able to find for me to see and I am wondering if you all can help m

eto be prepared for this appointment and what questions I should

ask. I am taking over 70 pages of medical tests including 2 biopsies

and the films from an MRCP from 2007. What else should I take and

what questions should I ask so that I can find out everything that I

should find out. I want to thank you all for you help and for

sharing your knowledge. The information that I have gained thus far

from this site has answered so many of my questions and helped me to

feel that I am not insane, which is how I have felt because many of

the dr.'s have told me that my symptoms have been somatic. Ha you

all have the same symptoms. Any I would be gratefule for any

suggestions so that I can have a productive meeting on Monday.

Thanks

Dawn

Stay up to date on your PC, the Web, and your mobile phone with Windows Live. See Now

[Guest guest]

A few suggestions for questions:1. Can I have a copy of my blood test results?2. Can I have a copy of my XXX (i.e. liver biopsy) result?3. Can you test for my fat soluble vitamin levels (A, D, K, E)?4. Can I have my blood drawn BEFORE I see you next time, so we can discuss the results?5. What stage is my PSC?6. What is my MELD score?7. What do you anticipate the timeframe/course of my PSC to be?8. How much Ursodiol should I be on?9. What is my CA-19-9 test result?10. How often will you do the ERCP test? Will you send brushings of cells from the bile ducts to the Mayo Clinic for FISH analysis?11. How often will you see me?Marie

To: From: mdwblaze@...Date: Tue, 9 Sep 2008 13:22:46 +0000Subject: What questions should I ask

Hi everyone;

On Monday I am scheduled to see a "specialist" in PSC. I have

diagnosed with PSC on and off since 2005 and have had symptoms since

1994. This will be the first "specialist" that my physician has been

able to find for me to see and I am wondering if you all can help m

eto be prepared for this appointment and what questions I should

ask. I am taking over 70 pages of medical tests including 2 biopsies

and the films from an MRCP from 2007. What else should I take and

what questions should I ask so that I can find out everything that I

should find out. I want to thank you all for you help and for

sharing your knowledge. The information that I have gained thus far

from this site has answered so many of my questions and helped me to

feel that I am not insane, which is how I have felt because many of

the dr.'s have told me that my symptoms have been somatic. Ha you

all have the same symptoms. Any I would be gratefule for any

suggestions so that I can have a productive meeting on Monday.

Thanks

Dawn

Stay up to date on your PC, the Web, and your mobile phone with Windows Live. See Now

[Guest guest]

Sounds like an excellent list. Print out the email and take it with you when you too see the doctor. Write down his responses on the sheet and scan it or copy the answers into a electronic version for your records.

Ian

A few suggestions for questions:1. Can I have a copy of my blood test results?2. Can I have a copy of my XXX (i.e. liver biopsy) result?3. Can you test for my fat soluble vitamin levels (A, D, K, E)?

4. Can I have my blood drawn BEFORE I see you next time, so we can discuss the results?5. What stage is my PSC?6. What is my MELD score?7. What do you anticipate the timeframe/course of my PSC to be?8. How much Ursodiol should I be on?

9. What is my CA-19-9 test result?10. How often will you do the ERCP test? Will you send brushings of cells from the bile ducts to the Mayo Clinic for FISH analysis?11. How often will you see me?

Marie

To: From: mdwblaze@...

Date: Tue, 9 Sep 2008 13:22:46 +0000Subject: What questions should I ask

Hi everyone;On Monday I am scheduled to see a " specialist " in PSC. I have diagnosed with PSC on and off since 2005 and have had symptoms since 1994. This will be the first " specialist " that my physician has been

able to find for me to see and I am wondering if you all can help m eto be prepared for this appointment and what questions I should ask. I am taking over 70 pages of medical tests including 2 biopsies and the films from an MRCP from 2007. What else should I take and

what questions should I ask so that I can find out everything that I should find out. I want to thank you all for you help and for sharing your knowledge. The information that I have gained thus far from this site has answered so many of my questions and helped me to

feel that I am not insane, which is how I have felt because many of the dr.'s have told me that my symptoms have been somatic. Ha you all have the same symptoms. Any I would be gratefule for any suggestions so that I can have a productive meeting on Monday.

Thanks Dawn

Stay up to date on your PC, the Web, and your mobile phone with Windows Live. See Now

-- Ian Cribb P.Eng.

[Guest guest]

Thank you all for the suggestions. I am compiling what I think is a

good list. Maybe it would be helpful if as a group this was placed

in one of the files for people to use in the future. I hope that's

not overstepping things since I am new to the group. But this is

great info.

Dawn

>

> Sounds like an excellent list. Print out the email and take it

with you when

> you too see the doctor. Write down his responses on the sheet and

scan it or

> copy the answers into a electronic version for your records.

>

> Ian

>

>

>

> >

> > A few suggestions for questions:

> >

> > 1. Can I have a copy of my blood test results?

> > 2. Can I have a copy of my XXX (i.e. liver biopsy) result?

> > 3. Can you test for my fat soluble vitamin levels (A, D, K, E)?

> > 4. Can I have my blood drawn BEFORE I see you next time, so we

can discuss

> > the results?

> > 5. What stage is my PSC?

> > 6. What is my MELD score?

> > 7. What do you anticipate the timeframe/course of my PSC to be?

> > 8. How much Ursodiol should I be on?

> > 9. What is my CA-19-9 test result?

> > 10. How often will you do the ERCP test? Will you send

brushings of cells

> > from the bile ducts to the Mayo Clinic for FISH analysis?

> > 11. How often will you see me?

> >

> > *Marie

> > *

> >

> >

> > ------------------------------

> > To:

> > From: mdwblaze@...

> > Date: Tue, 9 Sep 2008 13:22:46 +0000

> > Subject: What questions should I ask

> >

> > Hi everyone;

> >

> > On Monday I am scheduled to see a " specialist " in PSC. I have

> > diagnosed with PSC on and off since 2005 and have had symptoms

since

> > 1994. This will be the first " specialist " that my physician has

been

> > able to find for me to see and I am wondering if you all can

help m

> > eto be prepared for this appointment and what questions I should

> > ask. I am taking over 70 pages of medical tests including 2

biopsies

> > and the films from an MRCP from 2007. What else should I take and

> > what questions should I ask so that I can find out everything

that I

> > should find out. I want to thank you all for you help and for

> > sharing your knowledge. The information that I have gained thus

far

> > from this site has answered so many of my questions and helped

me to

> > feel that I am not insane, which is how I have felt because many

of

> > the dr.'s have told me that my symptoms have been somatic. Ha you

> > all have the same symptoms. Any I would be gratefule for any

> > suggestions so that I can have a productive meeting on Monday.

> >

> > Thanks

> >

> > Dawn

> >

> >

> >

> >

> > ------------------------------

> > Stay up to date on your PC, the Web, and your mobile phone with

Windows

> > Live. See

Nowhttp://clk.atdmt.com/MRT/go/msnnkwxp1020093185mrt/direct/01/>

> >

> >

> >

>

>

>

> --

> Ian Cribb P.Eng.

>

>

[Guest guest]

> > First I would like to thank everyone for their input. Here is

the list of questions that I have come up with. SOme are very

specific to me and things that are going on with me but I wanted to

ask for your thoughts and to see if you all have any additional

suggestions. Some of these are questions that my PCP would like to

know as he is unsure if they are related to the PSC or if he needs to

conduct more tests. Please let me know what you all think.

Questions for Hepatologist:

1) Do I have PSC?

2) What stage am I in?

3) What medications should I be on?

4) Are any of my current medications problematic?

5) What is my MELD score?

6) How often should I see you?

7) Can I have a copy of my blood and diagnostic test results?

8) Should I have another CA-19-9 test conducted and if so when

or how often the test should be conducted?

9) Can I have my blood drawn BEFORE I see you next time, so we

can discuss the results?

10) Will you perform Brushings with FISH analysis if needed, and

if so will they be performed her or will they be sent out to Mayo?

11) What do you anticipate the timeframe/course of my PSC to be?

12) When I get the pain in my side what should I do?

13) Itching – Help????

14) Energy levels

15) Vitamin def – please check and how often should they be

checked?

16) If stenting were to be needed how would it be done in me

since I cannot have an ERCP and if it cannot be done what are my

other options?

17) If I have mild chronic intestinal inflammation and chronic

inflammation of my mouth do I have IDB?

18) Chances of my daughter developing this?

19) Twinge chest pain?

20) Tachycardia?

21) Visible veins and swollen veins.

22) Leg pain?

23) Hypoglycemia?

24) Swollen glands?

25) Mouth Ulcers?

Thanks again

Dawn

> > >

> >

> >

>

[Guest guest]

I really like this list. I wish I would have had this available on my transplant evaluation. I will take it with in October for next appointment.I do think the bone scan should be a part of the list.My Doc sent me in for a bone scan on the last appointment just before ERCP#5 and found out that my bone density is 60% for what it should be for someone my age (41years). This is 3 years into  this deal. He started me on Calcium D and one a week phosphate.I just went in for knee and hand pain and found out it was arthritus  -> > A few suggestions for questions:> >> > 1. Can I have a copy of my blood test results?> > 2. Can I have a copy of my XXX (i.e. liver biopsy) result?> > 3. Can you test for my fat soluble vitamin levels (A, D, K, E)?> > 4. Can I have my blood drawn BEFORE I see you next time, so we can discuss> > the results?> > 5. What stage is my PSC?> > 6. What is my MELD score?> > 7. What do you anticipate the timeframe/course of my PSC to be?> > 8. How much Ursodiol should I be on?> > 9. What is my CA-19-9 test result?> > 10. How often will you do the ERCP test? Will you send brushings of cells> > from the bile ducts to the Mayo Clinic for FISH analysis?> > 11. How often will you see me?> >> > *Marie> > *> >> >> > ------------------------------> > To: > > > Date: Tue, 9 Sep 2008 13:22:46 +0000> > Subject: What questions should I ask> >> > Hi everyone;> >> > On Monday I am scheduled to see a "specialist" in PSC. I have> > diagnosed with PSC on and off since 2005 and have had symptoms since> > 1994. This will be the first "specialist" that my physician has been> > able to find for me to see and I am wondering if you all can help m> > eto be prepared for this appointment and what questions I should> > ask. I am taking over 70 pages of medical tests including 2 biopsies> > and the films from an MRCP from 2007. What else should I take and> > what questions should I ask so that I can find out everything that I> > should find out. I want to thank you all for you help and for> > sharing your knowledge. The information that I have gained thus far> > from this site has answered so many of my questions and helped me to> > feel that I am not insane, which is how I have felt because many of> > the dr.'s have told me that my symptoms have been somatic. Ha you> > all have the same symptoms. Any I would be gratefule for any> > suggestions so that I can have a productive meeting on Monday.> >> > Thanks> >> > Dawn> >> >> >> >> > ------------------------------> > Stay up to date on your PC, the Web, and your mobile phone with Windows> > Live. See Now<http://clk.atdmt.com/MRT/go/msnnkwxp1020093185mrt/direct/01/>> >> > > >> > > > -- > Ian Cribb P.Eng.> >

[Guest guest]

Great list. Hopefully, the hepatologist is prepared for a well informed patient!

The important thing is to have a list, and take good notes.

Arne 57 - UC 1977 - PSC 2000 Alive and well in Minnesota

From: [mailto: ] On Behalf Of mdwblaze

> > First I would like to thank everyone for their input. Here is the list of questions that I have come up with... Please let me know what you all think ...

..

[Guest guest]

Thanks and I will add the Dexa Scan for Bone Density and see if I

should have another one done.

In , " Arne " wrote:

>

> Great list. Hopefully, the hepatologist is prepared for a well

informed

> patient!

>

> The important thing is to have a list, and take good notes.

>

>

> Arne

> 57 - UC 1977 - PSC 2000

> Alive and well in Minnesota

>

>

> _____

>

> From: [mailto:psc-

support ] On

> Behalf Of mdwblaze

>

>

>

> > > First I would like to thank everyone for their input. Here is

> the list of questions that I have come up with... Please let me

know what

> you all think ...

>

> .

>

> http://geo.yahoo.com/serv?

s=97359714/grpId=1243731/grpspId=1705094696/msgId

> =104189/stime=1221012684/nc1=5191951/nc2=5191946/nc3=3848643>

>

[Guest guest]

,_._,___

" 18) Chances of my daughter developing this? "

A recent post by Chaim said the chances of your daughter developing the disease are apparently 17 times the chances of some one in the general public, but that 17 times only raises her chances to 2 %. Another words there is a 98% chance she won't get it!

Ian (52) PSC 89

[Guest guest]

Thanks,

I ask this quesion, because my daughter has almost every health

problem that I have and her gall bladder went the same way mine did,

with a lot of sludge and very small stones, only she was only 14. She

also has pain at times in her upper right side and no one seems to

know why. She's 18 so if there is anything we can do to help her not

go through this or detect it early I want to give her the best

possible odds. Hope that make some kind of sense. may just be a

worried Mom though!!

>

>

> >

> >

> > ,_._,___

> >

> " 18) Chances of my daughter developing this? "

>

[Guest guest]

one other really important piece of information to all. dr. kris

kowdley says it is a must that all people with psc MUST have yearly

colonoscopy with at least 50 biopsies taken. this is because the

increased risk of colon cancer and takin biopsies from different areas

is so important for early detection. all the best -rachel

>

> > > First I would like to thank everyone for their input. Here is

> the list of questions that I have come up with. SOme are very

> specific to me and things that are going on with me but I wanted to

> ask for your thoughts and to see if you all have any additional

> suggestions. Some of these are questions that my PCP would like to

> know as he is unsure if they are related to the PSC or if he needs to

> conduct more tests. Please let me know what you all think.

>

>

> Questions for Hepatologist:

>

>

> 1) Do I have PSC?

>

> 2) What stage am I in?

>

> 3) What medications should I be on?

>

> 4) Are any of my current medications problematic?

>

> 5) What is my MELD score?

>

> 6) How often should I see you?

>

> 7) Can I have a copy of my blood and diagnostic test results?

>

> 8) Should I have another CA-19-9 test conducted and if so when

> or how often the test should be conducted?

>

>

> 9) Can I have my blood drawn BEFORE I see you next time, so we

> can discuss the results?

>

>

> 10) Will you perform Brushings with FISH analysis if needed, and

> if so will they be performed her or will they be sent out to Mayo?

>

> 11) What do you anticipate the timeframe/course of my PSC to be?

>

> 12) When I get the pain in my side what should I do?

>

> 13) Itching – Help????

>

> 14) Energy levels

>

> 15) Vitamin def – please check and how often should they be

> checked?

>

> 16) If stenting were to be needed how would it be done in me

> since I cannot have an ERCP and if it cannot be done what are my

> other options?

>

> 17) If I have mild chronic intestinal inflammation and chronic

> inflammation of my mouth do I have IDB?

>

> 18) Chances of my daughter developing this?

>

> 19) Twinge chest pain?

>

> 20) Tachycardia?

>

> 21) Visible veins and swollen veins.

>

> 22) Leg pain?

>

> 23) Hypoglycemia?

>

> 24) Swollen glands?

>

> 25) Mouth Ulcers?

>

>

> Thanks again

>

> Dawn

>

>

>

> > > >

> > >

> > >

> >

>