Re: One more question before my appointment.

[Guest guest]

Dear ;

You shouldn't feel embarassed to ask if you may have other autoimmune

diseases. Please take a look at this article, especially Table 1, which

lists all of the diseases most commonly associated with PSC (not

counting inflammatory bowel disease!). Celiac disease and Sjogren's

syndrome are on this list.

http://www.wjgnet.com/1007-9327/11/7.asp

So you might print out this article, and ask ... shouldn't you be

making sure I don't have one or more of these other conditions, some of

which may be treatable (e.g. by diet in the case of Celiac disease).

Some of the literature from over 30 years ago showed that pancreatitis,

sclerosing cholangitis and Sjogren's syndrome (sicca complex) can occur

together:

PANCREATITIS, SCLEROSING CHOLANGITIS, AND SICCA COMPLEX

http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=260480

So you are definitely not a hypochondriac if you think that some of

your symptoms fit with Sjogren's or celiac disease.

I've read that Raynaud's is not uncommon in PBC, and since you have an

unusual history of PBC ---> PSC, then its not unreasonable to consider

this possibility as well.

Best regards,

Dave

(father of (22); PSC 07/03; UC 08/03)

[Guest guest]

I have Celiac's disease, I was diagnosed in 2004 and have had this diagnosis confirmed multiple times by blood tests and endoscope's. Until they figured out what was wrong with me they simply tried to call it whatever fit, like IBS, Chrons, diverticulitis, whatever. I learned from this that doctors don't like when patients suggest that they have a particular aliment, maybe it is vanity on their part, or maybe there are too many hypochondriacs in this world, what ever the case maybe I have noticed from experience that as soon as I suggested a disease, they dismiss it, therefore maybe literally missing it. I am unsure as to your symptoms, but what I learned to do is tell the doctor that I have been doing whatever it is that they advised to help get rid of the symptoms of a certain disease, ie: when I was so sick to my stomach and the doc was calling it IBS I simply said, "I am in a lot of pain which is odd since

I ate a wheat bread sandwich for lunch, just as you suggested." This prompted him to check me for wheat intolerance, when that came back with extremely high numbers, he ordered an endoscopy and found that I did indeed have Celiac's disease. I know how it feels to not feel well and be told that you are basically fine, other than whatever they have already diagnosed, so my suggestion to you, and you can call me crazy if you want, but my suggestion is to research the diseases you think you may have, and drop hints and clues about how you are feeling even though you have maybe taken gluten out of your diet or so on and so forth. I am not sure if this helped, but basically what I have learned from doctors is that they don't like to be told their business (even though most of the time that is exactly what they need) so if you really want to get to the bottom of it, research the heck out of it, and drop

the questions as just that, questions and let the doctor feel like he or she is coming to the conclusion, because as I learned, feeling better is WAY BETTER than worrying about hurting my pride. I maybe talking out my nose, but it did work for me, a few times, and feeling a little better is worth so much more than you know. GOOD LUCK - MY THOUGHTS ARE WITH YOU! B-jmhette2 wrote: Well I hope this is the last one for you

guys, sorry. Okay, this is my issue....I feel like I have so many symptoms of other things (sjogrens, raynauds, celiacs) but I don't know what to do. Do I mention it and sound like a hypochondriac or wait until they notice?I was told I was imaging everying for so long that sometimes I still think maybe I am. I'm having an endoscopy again and part of me wants them to find something so they know I'm not lieing but I'm scared if they do it will be bad, you know. Ugh...Thanks for listening again.PSC & PBCand who knows what else.

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