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 Dear Manish

The Dates for your batch are in the last week of Dec i.e. last sat n sun of Dec.

We have booked Yatri Niwas for your stay and a provisional program have been

Chalked out. but some of u will have to come to sewagram to finalise this as it

is ur batch's program.

hope for an early reply.

My contact no is 07152 260222

Dilip Gupta

On Tue, 26 Oct 2004 manish n kothari wrote :

>

>

>hi ashutosh,

>very nice to hear from you and very glad to know that you are a clinical

director,RTIICS.it gives a sense of pride for achievements of our fellow

classmates!!!

>it is proposed to be in mid december,though final dates are not fixed.

>please spread the word to all our classmates you are in touch with so that we

have more members and a respectable gathering.

>keep watching this space for more

>seems you are not a member of our e-mgims.it is a very nice way to be in touch

with our fellow mgims ites and share views/news and much more.i am asing dr

kishore shah who is the moderator and PITAMAHA of this group to enroll you as a

member.(in case it takes up a lot of your email box space you can always

un-subscribe anytime)

>i will try to call you in the evening today

>On Tue, 26 Oct 2004 Ashutosh Raghuvanshi wrote :

> >

> >Hi Manish, this is Ashutosh,how are you,i am in calcutta for last 5 yrs,i

would like to join the reunion pl keep me posted and let me know if i can do

something from my end,my add-DrA.Raghuvanshi,clinical director,RTIICS,124

mukundpur,Kolkatta 700099 tel no 033-24363000,033-24361268,cell-9830041172

fax33-24361267

>

>

>manish kothari

>

>

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  • 2 months later...

Hi -

I haven't really talked to Kirk much, but I have been reading what a hard time

his is having. I want you to know that I am praying for him and I hope that

everything turns out okay. We are here for you as well. If you have any

questions, or just want to vent feel free to vent to us. We ALL understand what

Kirk is going through and what you are going through.

Let Kirk know that we are thinking about him and praying for him.

Love and Support always,

Keri in CA

Kirk Bonanny wrote:

Hi Everybody,

Its Kirk's wife again, Just to let everyone know that Kirk Bonanny is

back in the hospital. He has very little use of his legs right now and went in

with the same headache problem. The ambulance came wednesday morning because I

was afraid to let him walk any distance since he's been falling alot. I couldn't

trust myself. better to let the professionals at it! We even went to a different

hospital this time. they seem alot more professional the the " General Hospital " !

He wanted me to tell everyone where he was. in case everyone was wondering.

I'll check in from time to time!

have a good one!!!!!!

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Hi -

My name is Keri and I live in Riverside, CA. I know that I am replying to your

e-mail almost a month later. But We had moved and my computer was down for so

long that when I did finally get in I had over 3000 e-mails. I went through and

flagged the ones that I wanted to read and that I want to respond too.

I wanted to respond to yours becuz your onset sounds alot like mine. Except

that mine happened all in a week. But I am always glad to see some one in CA.

The group in CA is getting larger by the month it seems. When I was first

diagnosed, almost 4 years ago, I only knew of 3 women that had " the dragon " in

CA. Now I think the numbers are at least 8 or maybe more. We definitely need

to try and put together a CA meeting. We've tryed in the past, I wasn't able to

make it. I don't know if the others ever meet up though. But I recently talked

to who lives in LA and I think Dottie(?) lives in Pasadena, then there

are a few of us that live out this why in the Inland Empire.

I am sooo sorry to hear about your onset. Prednisone was the only thing that

kept me mobile. When I left the hospital I was on 80mg of pred. Now I am

trying so hard to get off it, I am at 6mg today, who knows tomorrow?? But I am

also on MTX (shot) and Enbrel.

I need to post my history, I keep saying that I will then I forget (its that

short term memory loss).

Anyway, I am so glad to meet you and if you ever need to talk I am always here.

How have you been feeling lately?? What meds do they have you on?? I was

diagnosed at UCLA, in the ICU unit. What are you taking for the pain??

I hope you had a nice and pain free Christmas and A Happy New Year.

Talk to you soon,

Love and Support Always,

Keri in CA

sullivan wrote:

Hello -

I'm new to this group and new to this disease. My name is

Sullivan - I'm 35 years old and I live in Burbank, California. I'm

married to a wonderful husband - and I have two labs and I'm

pregnant with

my first child.

I feel so glad to have found a support group, but also very scared

about my future in dealing with this

disease. The doctors have mentioned this disease, but are not sure -

and worse yet - I'm 5 months pregnant and they are unsure of how to

treat it and not harm the baby. This scares me!

I have so many questions, but what I'm most looking for is information

and guidance.

I have been getting rashes - like hives - for about 4 years now. I

always thought it was an allergic

reaction to something - possibly tomatoes - but I couldn't be sure.

The rash would appear at night

and then by morning it would be gone. So - of course - I could never

show the doctor the rash.

I learned to live with the rash - which came more frequently through

the years - and I noticed that if

I was stressed it would also appear. Again - appearing at night and

gone the next day.

Last November - I was in Cancun on a trip and I got the rash all over

my body for the first time. This time-

it didn't go away! There were many doctors there on the trip and I

showed many, but no one had any answers. Maybe sunburn, maybe the food

in Mexico.

When I arrived home - a few days later - my foot swelled. I felt it

starting to swell in the morning and then by the evening it was 3 times

as large. I went to bed in pain and then the next day - the swelling

in my foot was less, but I could feel my finger starting to swell. The

next day it moved to my elbow. Then to my knee. It was the strangest

thing. I finally went to the emergency when it ended up in foot again,

but they had no idea what it was and sent me home. A few days later -

all the swelling was gone and I was very thankful.

The rash continued to appear as it usually would, but again - it was

staying longer each time.

Then - in May - the swelling started again. Again - moving to

different joints each day. Again - I ended up in the hospital. They

gave me a shot - which did help and sent me home and referred me to a

RD.

It took a month to get the appointment and once I did - there were no

symptoms. All I had to show him were

pictures of the disease. $3000 later - lots of blood work - he

couldn't diagnose it. Not Lupus - Not RA - Not Lymes - not so many

things, and yet - not sure!

I went home disappointed and frustrated.

In August - I got the rash again and showed it to a doctor who

suggested adding Omega Fatty Acids to my diet. I was willing to try

anything - I tried it and the rash disappeared and I was thrilled!

Finally - something was working!

What I didn't realize at that time in August was that I was already a

few weeks pregnant.

On November 18 I went on a cruise with my family to Cozumel. When I

got back to Florida - I woke up with a sore throat. I figured I was

exhausted from the trip and I became further exhausted with delays

getting back to California. The rash appeared again when I arrived

home and by November 29th at my doc appointment for the baby - the rash

was all over my body. My OB had never seen anything like it, but the

baby was okay and

for the most part my blood work was okay.

By the next day - my left knee was swollen. The next day - my right

knee was also swollen, but my left knee was still swollen - the pain

hadn't moved, but spread. I was so upset - not being able to walk and

being pregnant is not easy. By the next day - the pain had spread to

both my ankles, my toes, my fingers, my wrists

and my shoulders. I had never had it in my shoulders - so I was very

scared. Moving was becoming more difficult by the minute. My husband

was having to literally pick me up and walk me to the bathroom and help

me sit down and then pick me up again. Too many times each day. The

next day - it finally moved to my elbows, but it also moved to my neck

and back. And - something new - it seemed to be moving through my

muscles. By the next day - I felt paralyzed. I couldn't move - I was

in such pain and I was exhausted from lack

of sleep. The rash was getting worse also - it was now on my stomach

and my neck - two places it usually didn't go and the rash was more

raised and hot to touch and it hurt. My legs were throbing and it was

hard to move or breathe. Finally - I agreed to go to the hospital.

They admitted me immediately and put me on an IV with sugar water and

vitamins and started with the extensive blood work. The next day -

still in pain they did an EKG and Echo and then stool samples, urine

samples and more blood work. They also put me on 1 mg of morphine. I

had an RD, my PCP, two Internists, an Infectious Disease Specialist, a

Dermatologist and my OB/GYN. They decided to take a biopsy of the rash

and then put me on Medrol 60 mg in an IV. Within an hour of the

steroid - my swelling and rash disappeared! It was a miracle! I was

finally able to get some sleep.

The next day - with no diagnosis - they decided to send me home with

Prednisone - 40 mg that day - 15 mg 2x a day the next day and then 10

mg 2 x a day till I would see the doctor. I didn't make it through day

one.

With the first 15 mg dose - my pain and swelling came back with a

vengence! Not the rash, just the pain and swelling. So - they upped

the dose to 20 mg and then the next day - I saw the doc and they

changed my prescription to 20 mg 2x a day of Medrol. I took the first

dose and it never kicked in and I was in pain all day. I did take the

second dose, but couldn't sleep that night and the next day called the

doc and switched back to Prednisone. 20 mg 2 x a day.

It seems that each day I take the Prednisone it works less and less.

Right now - it's 11:30 pm on December 16th. My hands are both swollen,

my fingers, my shoulders, my knees, my toes and my neck. My muscles

ache.

I am sooo scared and frustrated. I spoke with the dermatologist and

she said they were so perplexed by my

biopsy that they sent it to UCLA to a specialist there to read. It

looked like a Rheumatoid Dermatitis (sp?).

I am to see my RD on Monday, but I am in so much pain and so scared and

feel uncertain as to what to do next. They were still waiting on blood

results last I heard, but no one seems to know anything.

I have been having night sweats - in the hospital and now. Then I get

the chills, but my fever never goes more

than 100.

I've been reading this site and although my numbers are not as high as

many of your numbers - they still seem follow a similar pattern. WBC

high. RBC low. Hemoglobin low. Hematocrit low. Immature Retic

Fraction high. Creatinine low. Bun low. Glucose high. ALP high.

Ferritin high. TIBC low. % Saturation low.

ALT high. C-Reactive Prot. High.

I have no idea what any of this means. And - they tested it each day

and tested different things also some days.

I am mostly wondering if by taking the prednisone - am I prolonging

this flare up? The past two times - it did go away - and now that I'm

" treating " it - the pain doesn't seem to be going away and only getting

worse.

How long does a usual flare up last? What can I do to lessen the pain

and swelling without hurting my baby?

I so appreciate your all taking the time to read this - and if anyone

has any ideas or helpful advice - I was be so grateful.

I think the worst part is that no one really understands the type of

pain I'm dealing with each day and night.

That's why I felt such an urge to write to all of you - especially

after reading some of your stories and realizing

you were describing my pain!

Thank you for this wonderful web site and forum to share.

Again - I feel very blessed to have found this group and I look forward

to hearing from anyone who can help me get through this pain and the

overwhelming feelings of helplessness!

Thank you!

Sullivan

Visit the Still's Disease Message Board

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The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute for

medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical or

professional medical services. You should consult your physician on specific

medical questions, particularly in matters requiring diagnosis or medical

attention. The International Still's Disease Foundation makes no representations

or warranties with respect to any treatment, action, application, medication or

preparation by any person following the information offered or provided within

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  • 1 month later...
Guest guest

hi rajesh

good to hear form u

i was so surprised to see varsha's name on the email

and then mentioning of mrigank. i thought it is u but

to confirm. it has been so many years.

i am fine

i am in london, doing vascular surgery training.

preeti is here. we have one child 4 years old, name

ADIT.

will be happy to talk to u on the phone. i cant tell u

how it feeels to be reunited together after so many

years and we can discuss lots of old things. we have

to get pandey and shambu also on line.

my phone number is

02077069417

07901554024

bye

ravul

__________________________________________________

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Guest guest

hi rajesh

good to hear form u

i was so surprised to see varsha's name on the email

and then mentioning of mrigank. i thought it is u but

to confirm. it has been so many years.

i am fine

i am in london, doing vascular surgery training.

preeti is here. we have one child 4 years old, name

ADIT.

will be happy to talk to u on the phone. i cant tell u

how it feeels to be reunited together after so many

years and we can discuss lots of old things. we have

to get pandey and shambu also on line.

my phone number is

02077069417

07901554024

bye

ravul

__________________________________________________

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Guest guest

hi rajesh

good to hear form u

i was so surprised to see varsha's name on the email

and then mentioning of mrigank. i thought it is u but

to confirm. it has been so many years.

i am fine

i am in london, doing vascular surgery training.

preeti is here. we have one child 4 years old, name

ADIT.

will be happy to talk to u on the phone. i cant tell u

how it feeels to be reunited together after so many

years and we can discuss lots of old things. we have

to get pandey and shambu also on line.

my phone number is

02077069417

07901554024

bye

ravul

__________________________________________________

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  • 2 years later...

Great

to hear from you . We were wondering. Glad its going OK. Rest

every chance you get and you’ll be fine, I think. If you can’t

eat, try some Ensure or something so you get some nutrients.

HI

WEll for all that know I

started my tx last friday and that night was

the worst ,I had the shakes ,hot and cold headache nasusa .That whole

weekend I spent in bed ,but by Tuesday's I was feeling so much better

,thank GOD ,I took my next shot last night but no side affects this

time just a little tired ,I have lost my appetite and I do get

agitated easliy but so far its been ok ,I just dont a want to jenx it

..I still have 6 months to go .

My computer has been acting up ,thats why I havent been on I have

some viruses ,just like me lol .I am still working and thats been ok I

just get tired easy .I have to work cant afford to take off .Just

wanted to let all know how I was so thanks for all who were wondering

,I hope I will get a new computer soon ,so I can keep up with

everything . Thanks AMANDA IN GA

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  • 3 months later...
Guest guest

>

> I'm new to this group. I joined yesterday. I was diagnosed on

April

> 28th after an 8 day hospital stay and I'm still reeling. I have no

> idea how I got this unless it was from sex with my ex-husband who

> used to use IV drugs before we were married. At any rate, I

suppose

> the " how " is less important than the " what does it mean for my

life "

> stuff, eh? I have already had a liver biopsy and was told that I

was

> in stage One. I didn't know enough to even ask about genotype,

> etc...shock will do that, I guess. I go to see a specialist to

> discuss treatement, etc., in about a week. I'm thinking, if I can

> get the funding for the medical treatment - why not just go ahead?

> Right now my biggest thing is trying to stave off a depression

> because I feel completely untouchable now - like I'm an outcast.

The

> man I love is currently deployed to Iraq and will be home in 8

days.

> I am feeling as if I can never touch him or be with him - he

admitted

> that he's a little afraid of contracting the Hep C virus and I

don't

> blame him.

>

> Anyway, sorry for the babble. I just don't have anyone to really

> vent to here. By the way, I'm 42, divorced, and the mother of a

> beautiful 3 year old whom the doctors have suggested I have tested

as

> well.

>

> Thank you for listening,

> a

>Hi a

Pleasure to meet u

..

Know that there r lots of great ppl here .

Please ask questions there is no such things as a stupid qestion.

Wecome to the group.

((((a)))))

tomhill

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Guest guest

a,

welcome. Everyone is shocked & scared at first. You are so

right that the “how” not important now. What it means for

your life and how you’re going to deal with it is the only important thing

now. You should have your 3 year old tested, just for peace of

mind. You could have had it when you gave birth and there is a small

percentage of passing it that way. But I’m not aware of anyone on

our group who has given it to their children that way. So like I said, it’s

more of a peace of mind test.

You

are NOT a leper! You’re not going to give it to anyone by touching

them or being near them or breathing on them. And if people are treating

you as an outcast you’re just going to have to educate the ones you care

about or have to be around and forget the rest. It’s their loss not

to have you around. As for your man, it’s understandable for him to

be scared, too. But education is the key, and that’s what we’re

here for. We’re going to help you learn so you can teach others.

Hep

C is not generally sexually transmitted unless there is blood to blood

contact. Both people would have to be bleeding or have open cuts for the

virus to pass. Skin to skin contact or blood to skin without an open

wound is are not good enough.

Love

& hugs,

Suppose you were an

idiot. And suppose you were a member of Congress.... But then I

repeat myself.

-Mark Twain

Hi

I'm new to this group. I

joined yesterday. I was diagnosed on April

28th after an 8 day hospital stay and I'm still reeling. I have no

idea how I got this unless it was from sex with my ex-husband who

used to use IV drugs before we were married. At any rate, I suppose

the " how " is less important than the " what does it mean for my

life "

stuff, eh? I have already had a liver biopsy and was told that I was

in stage One. I didn't know enough to even ask about genotype,

etc...shock will do that, I guess. I go to see a specialist to

discuss treatement, etc., in about a week. I'm thinking, if I can

get the funding for the medical treatment - why not just go ahead?

Right now my biggest thing is trying to stave off a depression

because I feel completely untouchable now - like I'm an outcast. The

man I love is currently deployed to Iraq and will be home in 8 days.

I am feeling as if I can never touch him or be with him - he admitted

that he's a little afraid of contracting the Hep C virus and I don't

blame him.

Anyway, sorry for the babble. I just don't have anyone to really

vent to here. By the way, I'm 42, divorced, and the mother of a

beautiful 3 year old whom the doctors have suggested I have tested as

well.

Thank you for listening,

a

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Guest guest

Hi Glenn,

My name is Kathy and I'm new to this group also. I take medication for

depression and I am concerned that treatment for my Hep C will make it

worse. I hope not. Even though I'm new, welcome.

I

>

> Would just like to say hi and introduce myself to everyone. My name

is

> Glenn. I am 50 years old, have a beautiful wife of 29 years, 3

> children, and 4 grandchildren. I was diagnosed with hep c about 2

> years ago. I also have bipolar disorder so to find a support group

is

> really great for me. I would like to thank everyone for the e-mails

> and all of your support and hope to hear more from you. Thank you.

>

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Guest guest

Nice to meet you and welcome to the family. D

glennbobagins wrote:

> Would just like to say hi and introduce myself to everyone. My

name is

> Glenn. I am 50 years old, have a beautiful wife of 29 years, 3

> children, and 4 grandchildren. I was diagnosed with hep c about 2

> years ago. I also have bipolar disorder so to find a support group is

> really great for me. I would like to thank everyone for the e-mails

> and all of your support and hope to hear more from you. Thank you.

>

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  • 1 month later...
Guest guest

Honey this is alot of info to digest. But Always Get copies of all of your lab work. It makes things easier. Also since you have to move, it is best to move BEFORE any real talks of next steps( treatment or not) really comes into play. Just remember you are not alone with your list of questions and your possible confusions.We all started out lost and scared. But together we Move forward from one day to the next.Love and hugsdSubject: Re: New to Group, Newly Diagnosed - Good morning again To: HepatitisCSupportGroupForDummies Date: Wednesday,

June 25, 2008, 9:06 PM

Thank You..it's all pretty heavy right now..plus, we are moving, like

3 hrs away to orlando, so that means changing Dr.s etc...delays in

everything, but good promotion, so good for us...

My Dr. ran BUNCHES of tests, including a confirmation test, virul

load? protiens in urine...etc. .am going in for an ultrasound on

Monday...

The world is spinning, so much is going on....

Thanx for listening..

brandi

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