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Hi Gang,

It's been a long time since I posted anything. ...I've been trying to catch up on emails but finally decided that the it won't be possible to read one month of PSC digests! so I have just been reading the last few days and trying to catch up on what's going on...I must say, even after 8 years of this disease, I still am learning things from you guys...I am so glad I found you all!! Anyway, I moved in April so that was fun (twice in one month) but we're all settled now. My URQ pain has been worsening so, my GI ordered a CT scan and then also did a colonoscopy...which was sooooo painful...I was under "procedural sedation" but a couple of times it didn't feel like sedation but sadism!!! My back (Upper back right quadrant???) has been hurting like crazy since the procedure....do any of you feel that aftera a colonoscopy?? He says things look fine and doesn't understand the pain...but wants to further investigate....that was over the phone and I'll see him next week to find out what "futher investigate " means!! I hope it isn't another ERCP....the last time I was in pain during the procedure with that too...oh well, que sera sera,

AUBREY, I have a question for you:

I used to live in Toronto 6 years ago and now live in California....except for the sunshine, I prefer Toronto to Canada and I prefer the Medical System there. I was in Toronto for a few days last month and some family members in Toronto advise me never to consider moving back-- that I am better off in the states as the Canadian Medical system is well, to put it bluntly they said CRAPPY.....I have never felt that way personally....I had a terrific Doctor, I had a terrific GI and when he felt he was unable to manage my disease (prior to the dx) he referred me to the best in the field in Toronto (Dr. Haber who ended up making the diagnosis). and all of this took place in a timely manner. My question is, do YOU feel that things are that drastically changed that patient care is compromised? I have never felt that way...maybe my family jut had bad experiences? In fact, I felt that the HMO system here was far worse than the OHIP in Toronto. (we no longer have HMO but I pay for it thru my nose!!!). My biggest fear is if I need a liver transplant...will I be better off in Canada or USA if I ever need a tx? I know this is a loaded question but I hope you will give me an honest answer.

Also, can someone please fill me in on how Barb (UK) is?

Thanks,

Dolly, Age 40, married, 2 girls psc dx 1995, crohns, gb removal 2002

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Hello. I have a question that you may not be able to answer, but

maybe you have some idea of how to go about finding an answer. I was

diagnosed last June with PSC when I was hospitalized for the third

time for cholangitis and septicemia. In March, I started getting

these electrical shock-like feeling that would run through my body.

They treated the cholangitis attack and, since they had no idea what

the shocks were, ignored them. They got a bit better, but when I had

my worst attack in June, the shocks were really bad. The doctor

there, out of town thank God! listened to me and gave me every test

he could think of. (He fought by insurance tooth and nail to keep me

at his hospital and get them to pay.(It was an E.R. admit out of

town.) I sure wish I lived near that Doctor!) MRI, CTscan, US, and

finally a bone scan because they thought they saw something on the

CTscan. Everything neurologically looked fine. The shocks

eventually faded, but now they are back. I had my blood tests done

again, and they are fine. My doctor here in town, has no interest in

finding out what these are. I just don't know where to go from

here. Have any ideas?

Thank you !

Janie

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That is the same thing I feel. The "shocks" start right new my liver and goes all the way to my back. Some times only lasting just a second others make me panic as if I was going to have a real attack, and since that was the worse pain I ever felt, I really panic. If you get any information or suggestions let me know. I feel like a copy cat but that is the best thing about this is nobody in the group things it is all in my head.

Mark,

Las Vegas

On Mon, 05 May 2003 04:18:53 -0000 "craminvegas" writes:

Hello. I have a question that you may not be able to answer, but maybe you have some idea of how to go about finding an answer. I was diagnosed last June with PSC when I was hospitalized for the third time for cholangitis and septicemia. In March, I started getting these electrical shock-like feeling that would run through my body. They treated the cholangitis attack and, since they had no idea what the shocks were, ignored them. They got a bit better, but when I had my worst attack in June, the shocks were really bad. The doctor there, out of town thank God! listened to me and gave me every test he could think of. (He fought by insurance tooth and nail to keep me at his hospital and get them to pay.(It was an E.R. admit out of town.) I sure wish I lived near that Doctor!) MRI, CTscan, US, and finally a bone scan because they thought they saw something on the CTscan. Everything neurologically looked fine. The shocks eventually faded, but now they are back. I had my blood tests done again, and they are fine. My doctor here in town, has no interest in finding out what these are. I just don't know where to go from here. Have any ideas? Thank you !Janie

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