RE: Body Temperature/Fevers& Pain-Sandi &

[Guest guest]

That just makes me mad… The woman who is filling in for my hep

dr pretty much told me the same thing, and then wouldn’t give me antibiotics

because my fever was below 100 by the time I got into the hospital. It had been

spiking between 101.7 and 99.4 for days. Turned out that I had a kink in my

biliary drain and I had a mild case of cholangitis.

----------------------

I also get on and off low grade fevers ranging

from 37.5C-37.9C (99.5F-100.2F). My GI says that this is normal for PSC but

does not warrant antibiotics until it hits 38.5C (101.3F).

[Guest guest]

Shahina,

Hi! I hope today is a good day! I'm so sorry to hear about the pain you're in

and the trouble you're having with your doctors. The best advice I can give you

is to be persistent. I've had doctors tell me that the pain/nausea/etc is all

in my head and not PSC related and that I needed a shrink. (Incidentally, the

shrinks basically said the docs are nuts and I don't have any medical-mental

issues instead that I have physical medical issues - duh!). I've had docs tell

me I'm a complainer and that I have to " suck it up. " I've had others say that

anyone else would just consider my symptoms annoying and not life-changing, etc.

In other words, there are a LOT of ill informed, bad doctors out there. But

here's the good news. There are also some really great doctors out there and if

you can find one who understands what you're going through and is willing to

fight for you, hang onto them! Most importantly, don't give up! I know it's

hard not to get

discouraged when you feel no one is understanding/believing/listening, but

someone will eventually.

I'm not sure what kind of help you're looking for in regards to your pain.

Maybe if you want to share some more details, I can see if it's anything that

I've dealt with and may have an idea about, but that's totally up to you. I'm

not pushing! Also, if you want to e-mail me privately, feel free. As to

pain meds, right now I'm on Dilaudid 6 mg as needed. They've also prescribed me

Tramadol, but to be honest, that doesn't even work at all for me. One of my

doctors said it barely even qualifies as a pain pill it's so minimal. My PSC

doc has also said that in a pinch if I need to, I can take two extra strength

Tylenol.

I hope some of this helps!

Sandi in VA (Rochester/VA, etc etc etc)

[Guest guest]

Shahina,

Hi! I hope today is a good day! I'm so sorry to hear about the pain you're in

and the trouble you're having with your doctors. The best advice I can give you

is to be persistent. I've had doctors tell me that the pain/nausea/etc is all

in my head and not PSC related and that I needed a shrink. (Incidentally, the

shrinks basically said the docs are nuts and I don't have any medical-mental

issues instead that I have physical medical issues - duh!). I've had docs tell

me I'm a complainer and that I have to " suck it up. " I've had others say that

anyone else would just consider my symptoms annoying and not life-changing, etc.

In other words, there are a LOT of ill informed, bad doctors out there. But

here's the good news. There are also some really great doctors out there and if

you can find one who understands what you're going through and is willing to

fight for you, hang onto them! Most importantly, don't give up! I know it's

hard not to get

discouraged when you feel no one is understanding/believing/listening, but

someone will eventually.

I'm not sure what kind of help you're looking for in regards to your pain.

Maybe if you want to share some more details, I can see if it's anything that

I've dealt with and may have an idea about, but that's totally up to you. I'm

not pushing! Also, if you want to e-mail me privately, feel free. As to

pain meds, right now I'm on Dilaudid 6 mg as needed. They've also prescribed me

Tramadol, but to be honest, that doesn't even work at all for me. One of my

doctors said it barely even qualifies as a pain pill it's so minimal. My PSC

doc has also said that in a pinch if I need to, I can take two extra strength

Tylenol.

I hope some of this helps!

Sandi in VA (Rochester/VA, etc etc etc)