Re: Hot Flashes and Chills/PSC Specialization - Enid

[Guest guest]

Hi, Enid.

The docs were never able to determine exactly what was causing the hot flashes.

You asked about the chills and said you get cold much easier now and asked

whether that is a PSC related thing. I'm not sure if I have an answer to that.

There could be a lot of reasons why that's happening. For instance, have you

lost weight? I have lost over 50 pounds since I was diagnosed with PSC and I'm

now under 100 and trying to gain some of that weight back. However, because I'm

so small, I'm often freezing. I will say though that my chills, when I get

them, are often an internal thing. I'm not sure how to explain it, but it's

almost like ice water runs through my veins/body. It's indifferent to

surroundings/weather, etc. I can be standing in a steaming hot shower and still

have the chills. I believe those kind of chills are PSC related if only because

I never experienced anything like it before I had PSC/got sick, etc. I don't

have any proof of this

though. Perhaps someone else out here on the boards can chime in and give you

a better answer!

As to your doctors-and-PSC-specialization question, that one is easy. The

answer is absolutely there are doctors who specialize in PSC. There are Drs.

Lindor and Gores at Rochester, Mayo, Dr. Harnois at Mayo ville and many

others I'm sure. If it all possible (and it sounds like you have pretty good

insurance), I would definitely get myself to a doctor who is as familiar with

PSC as possible!

If I can answer anything else for you or you just want to chat, let me know.

Best of luck. Hope you're feeling stronger soon!

Sandi in VA

[Guest guest]

Hi, Enid.

The docs were never able to determine exactly what was causing the hot flashes.

You asked about the chills and said you get cold much easier now and asked

whether that is a PSC related thing. I'm not sure if I have an answer to that.

There could be a lot of reasons why that's happening. For instance, have you

lost weight? I have lost over 50 pounds since I was diagnosed with PSC and I'm

now under 100 and trying to gain some of that weight back. However, because I'm

so small, I'm often freezing. I will say though that my chills, when I get

them, are often an internal thing. I'm not sure how to explain it, but it's

almost like ice water runs through my veins/body. It's indifferent to

surroundings/weather, etc. I can be standing in a steaming hot shower and still

have the chills. I believe those kind of chills are PSC related if only because

I never experienced anything like it before I had PSC/got sick, etc. I don't

have any proof of this

though. Perhaps someone else out here on the boards can chime in and give you

a better answer!

As to your doctors-and-PSC-specialization question, that one is easy. The

answer is absolutely there are doctors who specialize in PSC. There are Drs.

Lindor and Gores at Rochester, Mayo, Dr. Harnois at Mayo ville and many

others I'm sure. If it all possible (and it sounds like you have pretty good

insurance), I would definitely get myself to a doctor who is as familiar with

PSC as possible!

If I can answer anything else for you or you just want to chat, let me know.

Best of luck. Hope you're feeling stronger soon!

Sandi in VA

[Guest guest]

Hi Sandi,

I saw my GI doc on Tues. and armed with the info you gave me I was able to pin him down with my symptoms. It turned out he was pretty sure I had an infection in the bile ducts going on. I'm on Cipro and Metronidazole which are helping the flashes and chills.

I like you have lost weight since this first started, and am below 100 lbs. I am able to maintain that weight, but it takes a lot on my part. Good luck in gaining.

Thanks for all the info.

Enid

To: Sent: Thursday, March 5, 2009 9:23:43 PMSubject: Re: Hot Flashes and Chills/PSC Specialization - Enid

Hi, Enid. :)The docs were never able to determine exactly what was causing the hot flashes. You asked about the chills and said you get cold much easier now and asked whether that is a PSC related thing. I'm not sure if I have an answer to that. There could be a lot of reasons why that's happening. For instance, have you lost weight? I have lost over 50 pounds since I was diagnosed with PSC and I'm now under 100 and trying to gain some of that weight back. However, because I'm so small, I'm often freezing. I will say though that my chills, when I get them, are often an internal thing. I'm not sure how to explain it, but it's almost like ice water runs through my veins/body. It's indifferent to surroundings/ weather, etc. I can be standing in a steaming hot shower and still have the chills. I believe those kind of chills are PSC related if only because I never experienced anything like it before I had PSC/got sick, etc. I don't have any

proof of thisthough. Perhaps someone else out here on the boards can chime in and give you a better answer!As to your doctors-and- PSC-specializati on question, that one is easy. The answer is absolutely there are doctors who specialize in PSC. There are Drs. Lindor and Gores at Rochester, Mayo, Dr. Harnois at Mayo ville and many others I'm sure. If it all possible (and it sounds like you have pretty good insurance), I would definitely get myself to a doctor who is as familiar with PSC as possible! If I can answer anything else for you or you just want to chat, let me know. :)Best of luck. Hope you're feeling stronger soon! Sandi in VA

[Guest guest]

Glad I could help! Hope you're feeling lots better!

Sandi in VA