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Thanks ..I appreciate it..I will have to do something about the depression..I thought it was due to something else but my liver nurse seems to think it is Hep related..She asked that I be sure and mention it to the DR...I told her I was depressed and aggrevated easy and she said it was due to the Hep..We'll see on the 20th..Some in here would say me being easily agrevated is just from being a true Cajun huh Dave??? LOL..It's possible..

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Terry that is absoultely right!!! We were born with the right to be easily aggrevated but as I've said in the past if all you D's wouldn't turn into such A_Hs then we women wouldn't be such Bs....Humm think about that one for a little while!!!

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My best wishes go out to you, Janne. Maybe a different medication might help. I go to a shrink just for med monitoring (taking welbutrin now) who has other hep C patients. One thing he mentioned if the depression gets worse: adding a small dose of Adderol (sp?), which is a stimulant like ritalin, to the anti-depressant regimen. He said this has gotten good results. Just thought I'd mention it to you.

Kind regards,

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<P> & nbsp; & nbsp; Jan, I thought just being a woman made

you easyly agrevated.

<P> & nbsp; & nbsp; & nbsp; Susy's Old Goat

<P> & nbsp; <B><I>Jannewilms42@...</I></B> wrote:

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5px; BORDER-LEFT: #1010ff 2px solid " ><FONT

face=arial,helvetica><FONT lang=0 face=Arial

color=#0000a0 size=2 FAMILY= " SANSSERIF " ><I>Thanks

..I appreciate it..I will have to do something

about the depression..I thought it was due to

something else but my liver nurse seems to think it is

Hep related..She asked that I be sure and mention it

to the DR...I told her I was depressed and aggrevated

easy and she said it was due to the Hep..We'll see on

the 20th..Some in here would say me being easily

agrevated is just from being a true Cajun huh Dave???

LOL..It's possible..</I></FONT> <BR><!-- |**|begin egp

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Guest guest

Lucky you Jan----- I HAVE to take meds to do that & for BM's too

I take meds for serious CRS----Heck I have to take all knids of meds to be

able to make this body function @ all!!!

arlene

At 06:58 AM 5/13/02 EDT, you wrote:

> Arlene I have had the bathroom problem since my hysterectomy..Need to pee

>all the time!!

>

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Hi --Hope none of your fears come to fruition!!! You have very

justifiable reason for these 'fears' too

My reasoning for this is when I became aware(showing my symptoms) I had

thought it only fair to let people I came into contact with (casual) about

the hepC Ken & I found that we began experiencing what is commonly known

as 'social death' by all people we'd told (including relatives) even though

we knew there was the cause--by blood-to-blood contact Myself I got mine

via transfusion.......yes I did (in early years smoke pot!) I now have a

state permit to grow & possess it!......But due to regulations (0

tolerance) at transplant center --I do not indulge anymore -even though it

is legal for me to do so.... I had figured pot was a much safer product to

use -instead of the heavy drugs to which Drs prescribe!!!! I know I didn't

have as many symptoms with it ----but I'm still hoping to be able to get a

transplant--thne treatment will follow---so I have been having quite a bit

of pain w/o....and do not even use the heavy drugs til I'm almost ready to

keel over from the pain.

Scot --I wish I knew what to tell you of your dilemma......but I'll tell

you one thing I'm glad I DON'T live in VT!!!!

I have friends who are on police force or who have been.... & they seem to

have no problem with my problem....most are educated people you have

bothered to check this virus--it's only people who choose to remain

uneducated in this disease/virus that we reall have to 'watch out' for!!!

I'm hoping everything goes well for you & they continue to not do more

investigating..... but like I found you cannot hide it forever!!!

arlene

At 10:51 AM 5/13/02 -0400, you wrote:

> Thanks, Arlene, -- namely that's it's spread like the flu and

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>lifelg

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>

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>hired me.

>

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>

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>mean,

>roupsmail_0429.gif " ; var lrec_width=300; var lrec_height=250;

>

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Guest guest

Hi, Arlene,

Many thanks for your long reply. Knock on wood --- it looks like I'll be

able to keep working if I rest up on weekends, and also it looks like I

won't have to tell anyone. It helped a lot just to vent my 'paranoia' here.

I'm sorry to hear about the social ostracism you experienced. I have been

spared that---so far.

Best wishes for eventual good health,

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Guest guest

I haven't had as much trouble in that area. I don't tell people I'm not close to. The people close to me I have told and they have all been very supportive. I have also told them that it is passed along by blood to blood contact. -dz-

ACE <arken@...> wrote: Hi --Hope none of your fears come to fruition!!! You have veryjustifiable reason for these 'fears' tooMy reasoning for this is when I became aware(showing my symptoms) I hadthought it only fair to let people I came into contact with (casual) aboutthe hepC Ken & I found that we began experiencing what is commonly knownas 'social death' by all people we'd told (including relatives) even thoughwe knew there was the cause--by blood-to-blood contact Myself I got minevia transfusion.......yes I did (in early years smoke pot!) I now have astate permit to grow & possess it!......But due to regulations (0tolerance) at transplant center --I do not indulge anymore -even though itis legal for me to do so.... I had figured pot was a much safer product touse -instead of the heavy drugs to which Drs prescribe!!!! I know I didn'thave as many symptoms with it ----but I'm still hoping to be able to get atransplant--thne treatment will follow---so I have been having quite a bitof pain w/o....and do not even use the heavy drugs til I'm almost ready tokeel over from the pain.Scot --I wish I knew what to tell you of your dilemma......but I'll tellyou one thing I'm glad I DON'T live in VT!!!!I have friends who are on police force or who have been.... & they seem tohave no problem with my problem....most are educated people you havebothered to check this virus--it's only people who choose to remainuneducated in this disease/virus that we reall have to 'watch out' for!!!I'm hoping everything goes well for you & they continue to not do moreinvestigating..... but like I found you cannot hide it forever!!!arlene At 10:51 AM 5/13/02 -0400, you wrote:> Thanks, Arlene, -- namely that's it's spread like the flu and >

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,

Welcome. My experience is very similar. My daughter is now 8. Her PC

seizures began when she was 1 1/2 and lasted about 45 min. She began

Tegretol at age 4 and the dosage has steadily increased, because of

breakthrough seizures as she grew.

However, I am to the point where I would like to find alternatives to

the medication, because of the way they affect her as to moodiness and

memory loss. She has a normal IQ and functions fairly well in school

and socially. Kindergarten and 1st grade were tougher than this year

in 2nd grade. She had trouble focusing and making friends, but much of

that has improved, however not entirely. I am especially interested in

the biofeedback discussions in this group and intend to pursue it later

this summer. I'm not sure if she's old enough yet, I still have a lot

to learn and am just beginning this new way of thinking about her

seizures.

Best of luck to you and your daughter,

Sandy

> Hi,

> I wanted to introduce myself, my name is I am married and have

> a 5 year old daughter who was dignosed 1 year ago with a partal

> complex seizure disorder. She had normal cat scan and mri and an

> abnormal eeg. She was given 200 mg of tegretol split between a.m.

> and p.m. in about 6 months with some weight gain her p.m. dose was

> raised 50 mg. As of two week ago she has started having breakthrough

> seizures. Her original seizures - 1 year ago - (2) lasted for about

> 40 minutes and required an ambulance visit. Her latest seizures

> almost appear like she is a skipping record - her eyes lose focus and

> she says da da da for 3-5 seconds. She acually has a neurology

> appointment today. I wanted to know if any of you have had similar

> experiences? Thanks for listening

> '

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Thanks for the quick reply Sandy. The only side effects I have

noticed so far is she has the tendency to want to eat like a 12 year

old boy - so I have to watch that - I will have to see what the Dr

says today - Did your Dr tell you that there was a chance that she

would " grow out of it " and if so did he give you a %. My Dr. said 85%

grow out of seizures that have no explanations as to why they are

happening.

Anyways, Thanks for your time

'

Mom of 5 year old .

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Dear Sandy, 8 is old enough for nuerofeedback. See my next e-mail for a copy of

an e-mail sent by Phil to . Gail Pike

" sandyharty " <sasaharty@...> wrote:

>,

>

>Welcome.  My experience is very similar.  My daughter is now 8.  Her PC

>seizures began when she was 1 1/2 and lasted about 45 min.  She began

>Tegretol at age 4 and the dosage has steadily increased, because of

>breakthrough seizures as she grew.

>

>However, I am to the point where I would like to find alternatives to

>the medication, because of the way they affect her as to moodiness and

>memory loss.  She has a normal IQ and functions fairly well in school

>and socially.  Kindergarten and 1st grade were tougher than this year

>in 2nd grade.  She had trouble focusing and making friends, but much of

>that has improved, however not entirely.  I am especially interested in

>the biofeedback discussions in this group and intend to pursue it later

>this summer.  I'm not sure if she's old enough yet, I still have a lot

>to learn and am just beginning this new way of thinking about her

>seizures.

>

>Best of luck to you and your daughter,

>Sandy

>

>

>> Hi,

>> I wanted to introduce myself, my name is I am married and have

>> a 5 year old daughter who was dignosed 1 year ago with a partal

>> complex seizure disorder. She had normal cat scan and mri and an

>> abnormal eeg. She was given 200 mg of tegretol split between a.m.

>> and p.m. in about 6 months with some weight gain her p.m. dose was

>> raised 50 mg. As of two week ago she has started having breakthrough

>> seizures. Her original seizures - 1 year ago - (2) lasted for about

>> 40 minutes and required an ambulance visit. Her latest seizures

>> almost appear like she is a skipping record - her eyes lose focus and

>> she says da da da for 3-5 seconds. She acually has a neurology

>> appointment today. I wanted to know if any of you have had similar

>> experiences? Thanks for listening

>> '

>

>

>

>

>

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,

Our doctor and neurologist said there was a chance she may grow out of

it, but there was no percentage given. In the meantime we're working

on a healthy lifestyle and looking into alternative treatments.

Sandy

> Thanks for the quick reply Sandy. The only side effects I have

> noticed so far is she has the tendency to want to eat like a 12 year

> old boy - so I have to watch that - I will have to see what the Dr

> says today - Did your Dr tell you that there was a chance that she

> would " grow out of it " and if so did he give you a %. My Dr. said 85%

> grow out of seizures that have no explanations as to why they are

> happening.

> Anyways, Thanks for your time

> '

> Mom of 5 year old .

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Guest guest

, yes it sounds to me like candida, like Connie mentioned, print out some

information and all your symptoms & take to the Dr. i have kept a journal and

when something comes back or someone needs information I look back on it, it

really helps.

watch your diet, keep a chart on what you ate & what meds and how many and

how you felt that day & the next. exercise helps to.

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it is nice to meet you...Glad you ahve been lurking about and finally joined in...I am Jan from Louisiana.I'll be in touch tomorrow or later tonight..Hep C does cause neausea...Remember the flu like symptoms???

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I thought the flu-like symptoms (nausea for one) was attributed to those of us under treatment. Are you saying that nausea is a possible symptom of having Hep C? Because I've definitely been more nauseated this last year.

Re: [ ] Introducing Myself

it is nice to meet you...Glad you ahve been lurking about and finally joined in...I am Jan from Louisiana.I'll be in touch tomorrow or later tonight..Hep C does cause neausea...Remember the flu like symptoms???

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I applaud your attitude towards hep c. When Greg our son was first diagnosed I was so fearful that it was a death sentence. To be sure Hep C is a formidable foe. However it is not necessairly a death sentence. Most will die with it not from it. It is however a chronic health care concern. You all have helped me so much to smile and be able to go on with life and find a balance with having a loved one with Hep C. I think the first thing we are learning is not to treat Greg any different and yet we know its ever there and right choices need to be made. Any life worth living should be lived to the fullest extent. [ ] Introducing Myself Hi, I joined your list about a week ago and have been lurking. I was with another group but they seemed to be more into of gay bashing and political concerns, so I dropped out. You seem to be a very supportive and caring group and that's what I want and need, so here goes. I was diagnosed with Hep C about 2 yrs ago. Someone who donated blood for a transfusion I had back in 1989 came back to give blood again and was diagnosed with Hep C. The County tracked me down, I went to be checked.......and sure enough I have it. I'm now 62 yrs old, and when I was told it would be 20 to 30 yrs before I could even tell anything was going on, I didn't worry much about it. But I've since read that it's worse when you get it from a blood transfusion and I'm worried because my last two ALT/AST's were very high. I go every 6 mos for a blood test, plus have had two CT-Scans with IV dye, and one ultrasound, all which came back negative. But I'm tired all the time, and find myself getting more depressed, I find myself spending entirely too much time thinking about Hep C. After the last CT-Scan, my doctor (internist) checked with an Oncologist who said the high blood count could be due to tumors developing that wouldn't show up with the CT-Scan. So I have to go back for another blood test at the end of September. I haven't been drinking, and I take milk thistle daily because I read that it might be good for HCV. (Comments?) On the personal side, I have a VERY supportive husband (thank God!) and two wonderful cocker spaniels. Our last two camping trips resulted in me getting nauseated, and we had to come back early. I don't know if that's attributable to the disease or not. (I'm not on treatment). I'm not exactly sure why my dr doesn't recommend a biopsy at this point, is it better for some reason to put if off? (I have heard that my HMO insists you take the treatment once you've had the biopsy, so that may be part of it.) I don't want to rush into doing anything that isn't necessary yet, but I don't want to hide my head in the sand either! What do you think I should do next?

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Hi

Welcome to the group. You'll find the people here friendly and supportive.

hepc is a very slow progressing disease so don't worry too much while your Dr. takes time to sort things out.

I have found over the years dealing with hepc that keeping a positive attitude helps just about as good as anything. I used to dwell on the fact that I had this disease, but have learned that there isn't anything I can do about it so I just go on enjoying life to the best of my abilities.

[ ] Introducing Myself

Hi, I joined your list about a week ago and have been lurking. I was with another group but they seemed to be more into of gay bashing and political concerns, so I dropped out. You seem to be a very supportive and caring group and that's what I want and need, so here goes.

I was diagnosed with Hep C about 2 yrs ago. Someone who donated blood for a transfusion I had back in 1989 came back to give blood again and was diagnosed with Hep C. The County tracked me down, I went to be checked.......and sure enough I have it. I'm now 62 yrs old, and when I was told it would be 20 to 30 yrs before I could even tell anything was going on, I didn't worry much about it. But I've since read that it's worse when you get it from a blood transfusion and I'm worried because my last two ALT/AST's were very high. I go every 6 mos for a blood test, plus have had two CT-Scans with IV dye, and one ultrasound, all which came back negative. But I'm tired all the time, and find myself getting more depressed, I find myself spending entirely too much time thinking about Hep C. After the last CT-Scan, my doctor (internist) checked with an Oncologist who said the high blood count could be due to tumors developing that wouldn't show up with the CT-Scan. So I have to go back for another blood test at the end of September. I haven't been drinking, and I take milk thistle daily because I read that it might be good for HCV. (Comments?)

On the personal side, I have a VERY supportive husband (thank God!) and two wonderful cocker spaniels.

Our last two camping trips resulted in me getting nauseated, and we had to come back early. I don't know if that's attributable to the disease or not. (I'm not on treatment).

I'm not exactly sure why my dr doesn't recommend a biopsy at this point, is it better for some reason to put if off? (I have heard that my HMO insists you take the treatment once you've had the biopsy, so that may be part of it.) I don't want to rush into doing anything that isn't necessary yet, but I don't want to hide my head in the sand either! What do you think I should do next?

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Hi

Nausea is very common for people with liver disease. Back in the 70's when I had hepa I was nauseated for weeks. Was impossible to keep any food down.

Re: [ ] Introducing Myself

it is nice to meet you...Glad you ahve been lurking about and finally joined in...I am Jan from Louisiana.I'll be in touch tomorrow or later tonight..Hep C does cause neausea...Remember the flu like symptoms???

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Thank you, , for both your postings. I have to admit I've wanted to shake my doctor and yet I know that ultimately my health is MY responsibility. And just knowing that others suffer from nausea helps, it's one of the reasons that I'm not looking forward to treatment when it comes, because I'm nauseated so much of the time as it is!

But like everything else, just KNOWING helps!

Re: [ ] Introducing Myself

it is nice to meet you...Glad you ahve been lurking about and finally joined in...I am Jan from Louisiana.I'll be in touch tomorrow or later tonight..Hep C does cause neausea...Remember the flu like symptoms???

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Hi, ,

A belated welcome; I'm catching up on some back email. I'm , age 58,

living in Vermont, and am coming up on six months into treatment.

I'm not exactly sure why my dr doesn't recommend a biopsy at this point, is it better for some reason to put if off?

No! Unless there's some medical reason NOT to have it. It'ls the best diagnostic tool there is. There are other tests but they can't tell you as much as a biopsy can. I won't say it's "fun," but it's not all that bad, either. You'll just be really out of it for a day, and that's it. You should really press your doctor on why he or she doesn't recommend it.

Regards,

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, your diagnosis can mean just about anything. I don't know what pills you

were given, but you need to see someone who understands the disease as quickly

as posible. PA can affect one is so many ways. Exhaustion is the most telling

sign along with chronic pain. It can come and go and you'll think you are

totally free of it for periods of time. But you do need to be in the care of

someone who knows what to expect from PA and how to go about treating it. If

you don't get someone who takes you seriously, keep looking. Sylvia

nuttymoolisa2003 <lisa.bushaway@...> wrote:Hi my names lisa, im 34

years old and was told this morning at the

hospital i have psoniatic arthritis. i was so taken back [even though

ive suffered with

psorisis since the age of 11] that i didnt ask anything. could any

one fill me in on what this will mean to me . ive been given tablets

to start tomorrow. but im now concerned in what to expect. my two

index fingers already show signs [thats why i was refered in the

first place. I suffered for months with feeling so tired and so

painful in the mornings but i had a fall last year and assumed it was

a result of that. many thanks kinds regards lisa

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Hi ,

Everyone's experience with PA is different. Some people have very

disabling effects with a lot of pain and joint damage. The good news

is that not everyone does. The difference is a bit of good luck,

staying physically active and otherwise healthy and keeping on top of

your therapeutic treatments.

I've had PA for over 10 years. I am much better off now then I was

10 years ago. I exercise and ski, participate in sports with my kids

and my weight is good. I have had several med changes over the years

as we tuned to the best treatment for me and better meds became

available. I take 2 meds (pills) twice a day.

I can say that I have almost no limitations and feel better then I

did 10 years ago. My one limitation, it is unwise to run or do other

high impact activities as PA makes you more susceptible to joint

problems. Personally the good news is I didn't run anyway.

I wish you good luck.

Fred

> Hi my names lisa, im 34 years old and was told this morning at the

> hospital i have psoniatic arthritis. i was so taken back [even

though

> ive suffered with

> psorisis since the age of 11] that i didnt ask anything. could any

> one fill me in on what this will mean to me . ive been given

tablets

> to start tomorrow. but im now concerned in what to expect. my two

> index fingers already show signs [thats why i was refered in the

> first place. I suffered for months with feeling so tired and so

> painful in the mornings but i had a fall last year and assumed it

was

> a result of that. many thanks kinds regards lisa

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sylvia, many thanks for your reply ive been put on salazoptrin en tabs 500mg

to increase from 1 per day for a week then two per day for the second week

etc until upto 4 tabs a day. im getting really concerned because i have

disabled daughter who has a regressive condition life threatening she needs

me so much. will tablets help me ?? and is pa classed as a disabilty look

forward to hearing from you lisa

[Editor's Note:

Sylvia's advice is on target; you need to find a doc who understands PA, and

there are obviously quite a few who don't, as members can tell you. I'm not

familiar with the drug you mention, and could find no references in the

literature to " salazoptrin " (it sounds immumosuppressive). Are you sure of

spelling?

In re the disability issue: Cases are evaluated individually, but there is no

doubt that a large number of people with refractory PA, and some with controlled

disease, are on governmental disablilty programs. (My doc keeps suggesting I

should quit working and do so, for instance. I'm just not ready to give up yet.)

D.

-- Re: [ ] introducing myself

, your diagnosis can mean just about anything. I don't know what pills

you were given, but you need to see someone who understands the disease as

quickly as posible. PA can affect one is so many ways. Exhaustion is the

most telling sign along with chronic pain. It can come and go and you'll

think you are totally free of it for periods of time. But you do need to be

in the care of someone who knows what to expect from PA and how to go about

treating it. If you don't get someone who takes you seriously, keep looking

Sylvia

nuttymoolisa2003 <lisa.bushaway@...> wrote:Hi my names lisa, im 34

years old and was told this morning at the

hospital i have psoniatic arthritis. i was so taken back [even though

ive suffered with

psorisis since the age of 11] that i didnt ask anything. could any

one fill me in on what this will mean to me . ive been given tablets

to start tomorrow. but im now concerned in what to expect. my two

index fingers already show signs [thats why i was refered in the

first place. I suffered for months with feeling so tired and so

painful in the mornings but i had a fall last year and assumed it was

a result of that. many thanks kinds regards lisa

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Hi I just joined this group.....my daughter 14 has had seizures falling

asleep or waking up....grand mal.....but since she has been taking

glyconutrients , she seems to be o.k......if you would like more info....let

me know....

annick

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Annick

It is the most necessary nutrient in my kids regime! I especially give PLUS

(9 a day) to my son.

Greases the snapysis of the brain so they don't misfire as well as reduce

inflammation and helps hormone control in the brain and thyroid, absolutely

essential!

Kathy

www.childscreen.org

Re: [ ] Introducing Myself

> Hi I just joined this group.....my daughter 14 has had seizures falling

> asleep or waking up....grand mal.....but since she has been taking

> glyconutrients , she seems to be o.k......if you would like more

info....let

> me know....

>

> annick

>

>

>

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