Re: Re:PSC affecting brain: Debbie

[Guest guest]

Myself, too do experience a mental fatigue and fuzziness, although i am like

yourself, not at that stage. But i don't think that it is only when i get tired.

It can happen anytime. But with physical fatigue, i mostly would end up with

more weakness, a general ill feeling and chills that is sometimes accompanied by

a low grade-fever, by the end of the day usually. And when fever, then i would

start to worry and wonder about is that triggering an infection in my bile duct

or is it my immune system, since thing would start to get out of order,

specially the upper respiratory.

I do think it PSC. Although, not documented, but only at the end stage.I have

always wondered why i have a lack of concentration and some fogginess at times

" it is like i am not really there " as you said. And my memory has become

terrible. And this does frustrate me a lot since i was very good with numbers

and such. And have studied years and worked in a profession that is based mainly

on mathematics [engineering]. Now, i find it sometimes hard to try to figure out

or follow up on things that needs some calculation. And i would get lost in the

middle of such a discussion, or a conversation, as you have mentioned. And i do

forget a lot. even with names, to embarassement.

You are right that Sleep does help but with me i would say that sleep has sworn

not to have anything to do with me! Only few days ago, it did start to improve

a little, by taking Nortriptyline. A medicine for pain that also can help with

insomnia. But it is making my dry mouth, much drier.

It is very hard. And whenever i try to forget my continous worry and anxiety,

and to take one day at a time with faith, PSC has become the center of my life.

And as some has mentioned, it did also changed my look at life, and did make me

to try and appreciate every day like never before. I also consider this group, a

miracle. Before i get to find them, about 3 years ago i knew nothing. And i

would crave for any research and attend [loaded with questions], other seminars

on liver diseases, specially, PBC, And that is when i joined the Mayo study.

My best wishes to you.

Subject: Re:PSC affecting brain

To:

Date: Tuesday, May 20, 2008, 7:00 AM

I think it's just part

> of the fatigue that many people with liver disease suffer and which has

> yet to be explained by medical research.

>

> Good luck. (Sacramento dx UC and PSC 2001)

>

I experience a mental fatigue and fuzziness when I get tired & it

doesn't have anything to do with eating (or hepatoencephalophat hy.

I'm nowhere near end stage PSC). It is one of the things that led me

to get diagnosed in the first place. My husband and I call them

" check-out " episodes. It's always at the end of the day when I'm

tired & it's like I hit a wall. Not only does my body quit, but my

mind seems to quit, too. My husband says he can talk to me, but it's

like I'm not really there. I usually have a fuzzy memory about

what

happens after that point, and I can't remember the conversations we

have. Once I have a chance to sleep, even if it's just a few hours,

I'm clear headed again.

It's a very frustrating thing because I am not conscious of the

decisions I make at that time. It's one thing if you're trying to get

something done at night, laundry for instance, and you get tired and

decide to only do one load instead of the three you were planning.

But, when I have one of these episodes, I will just quit in the middle

of doing the laundry, and when I wake up the next morning, I say, " Oh

I guess this is where I stopped last night. "

Does anyone else experience that type of mental fatigue? Since

getting diagnosed with PSC, I have assumed it was related, but I don't

really know.

Debbie

[Guest guest]

Myself, too do experience a mental fatigue and fuzziness, although i am like

yourself, not at that stage. But i don't think that it is only when i get tired.

It can happen anytime. But with physical fatigue, i mostly would end up with

more weakness, a general ill feeling and chills that is sometimes accompanied by

a low grade-fever, by the end of the day usually. And when fever, then i would

start to worry and wonder about is that triggering an infection in my bile duct

or is it my immune system, since thing would start to get out of order,

specially the upper respiratory.

I do think it PSC. Although, not documented, but only at the end stage.I have

always wondered why i have a lack of concentration and some fogginess at times

" it is like i am not really there " as you said. And my memory has become

terrible. And this does frustrate me a lot since i was very good with numbers

and such. And have studied years and worked in a profession that is based mainly

on mathematics [engineering]. Now, i find it sometimes hard to try to figure out

or follow up on things that needs some calculation. And i would get lost in the

middle of such a discussion, or a conversation, as you have mentioned. And i do

forget a lot. even with names, to embarassement.

You are right that Sleep does help but with me i would say that sleep has sworn

not to have anything to do with me! Only few days ago, it did start to improve

a little, by taking Nortriptyline. A medicine for pain that also can help with

insomnia. But it is making my dry mouth, much drier.

It is very hard. And whenever i try to forget my continous worry and anxiety,

and to take one day at a time with faith, PSC has become the center of my life.

And as some has mentioned, it did also changed my look at life, and did make me

to try and appreciate every day like never before. I also consider this group, a

miracle. Before i get to find them, about 3 years ago i knew nothing. And i

would crave for any research and attend [loaded with questions], other seminars

on liver diseases, specially, PBC, And that is when i joined the Mayo study.

My best wishes to you.

Subject: Re:PSC affecting brain

To:

Date: Tuesday, May 20, 2008, 7:00 AM

I think it's just part

> of the fatigue that many people with liver disease suffer and which has

> yet to be explained by medical research.

>

> Good luck. (Sacramento dx UC and PSC 2001)

>

I experience a mental fatigue and fuzziness when I get tired & it

doesn't have anything to do with eating (or hepatoencephalophat hy.

I'm nowhere near end stage PSC). It is one of the things that led me

to get diagnosed in the first place. My husband and I call them

" check-out " episodes. It's always at the end of the day when I'm

tired & it's like I hit a wall. Not only does my body quit, but my

mind seems to quit, too. My husband says he can talk to me, but it's

like I'm not really there. I usually have a fuzzy memory about

what

happens after that point, and I can't remember the conversations we

have. Once I have a chance to sleep, even if it's just a few hours,

I'm clear headed again.

It's a very frustrating thing because I am not conscious of the

decisions I make at that time. It's one thing if you're trying to get

something done at night, laundry for instance, and you get tired and

decide to only do one load instead of the three you were planning.

But, when I have one of these episodes, I will just quit in the middle

of doing the laundry, and when I wake up the next morning, I say, " Oh

I guess this is where I stopped last night. "

Does anyone else experience that type of mental fatigue? Since

getting diagnosed with PSC, I have assumed it was related, but I don't

really know.

Debbie