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This is ames.. the one that kicked you out, today. :) The room was not being

so " mean " to you. You were quoting song lyrics one right after another, and

we asked you to stop a number of times. The rule in the room is when someone

is asked to stop doing something a NUMBER of times, and doesn't follow thru,

it is the operators job to remove them from the room. If you don't like it,

you don't have to come back. It's up to you.

Thanks!

Ames

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  • 8 months later...
Guest guest

Go for it Pat. Do anything your Doc will do. Once

you have no insurance it is a constant battle for any

and everything medical. No you are " NOT " paranoid. I

have seen it firsthand and believe me it is no picnic

in the park.

Take Care, Connie

> My question is: Do you think I'm paranoid if I go to

> doc and ask to be tested for other things, like

> autoimmune stuff, and other sides to hep?

__________________________________________________

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Guest guest

Go for it Pat. Do anything your Doc will do. Once

you have no insurance it is a constant battle for any

and everything medical. No you are " NOT " paranoid. I

have seen it firsthand and believe me it is no picnic

in the park.

Take Care, Connie

> My question is: Do you think I'm paranoid if I go to

> doc and ask to be tested for other things, like

> autoimmune stuff, and other sides to hep?

__________________________________________________

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  • 1 year later...
Guest guest

In a message dated 4/3/2002 8:34:09 AM Pacific Standard Time,

jlanneau@... writes:

> JUST MAYBE it

> will have the effect of raising consciousness of

> people who are susceptible (for now that means people

> who wre HLA-B27 pos); but since food poisoning

> accounts for most of enteric reiter's, if everyone

> knew this could lead to Debilitating Form of Arthritis

I think, and this is just my opinion, but the best thing that can happen for

reiters will be to have *A* J. Fox come down with it. Parkinson's

has gained tremendous recognition due to his unfortunate illness.

I am not looking to sue anyone, My belief is that Adrienne did not deserve

this illness. No one " gave " it to her. She saw many doctors before being

diagnosed. Life is not fair, and sometimes it sucks. But she is Alive!

With the right treatment and attention, she is doing well. She is likely to

give up her dreams of being an Orthopedic surgeon, specializing in injuries

of the arts and wrestling... But that is ok, there are other areas of study.

Maybe she will be a rheumatologist? Maybe she will one day own a coffee

shop?

I think publicity is good. I think this illness needs more. We can call our

local paper, local radio stations, request an interview. Share what we know.

Offer to be the program in a group we are involved in, sharing information

about this arthritis.

I applaud your desire to raise the level of knowledge. I know we can

achieve it. It will just take time.

K

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  • 1 year later...

What is the difference between a ENT and an Otologist? I have seen

that Otologist word used here for the past week I been here. All I

have ever seen is an ENT specialist, I have the same ENT Doctor for

24 years now. I have a good Doctor! He is a year older than me. I

was one of his first c-toma patients with massive destruction. Any

one had the same doc for a long time? Just curiouse.....

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Hi Glenda

An otologist is an ENT doctor, but one who has taken an extra specialization dealing solely with ears - they'd do much less, if any, nose and throat. An otologist should have more experience with a disease like ctoma. I actually see a doctor called a neurotologist (aka skull based surgeon). This specialization deals mostly with ear diseases which affect the auditory and balance systems and the cranial nerves etc .

Regarding your other question about tiredness: it could just be a factor of age of course (I'm a year younger than you and never far from worn out LOL). Though I wondered if may be slightly of balance or unco-ordinated at the moment. That can leave you tired, especially the more you move around, because you're constantly having to adjust (and may not necessarily be conscious of it) and put a little more effort into veering off to the side and dealing with spatial co-ordination. Certainly I had severe balance problems for a while but after they subsided I was still generally off-balance and I was usually exhausted from having to cope with it.

Phil

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Thank you for your response to my post. I understand! Thank you for

the info. I am wondering if I am even in the right place for

treatment now. My ENT specialist has been with me for over 20 years.

He never mentioned these doctors ever. Nor did I know to ask. I hope

all my past surgeries were not in vain here. Now I dont know what to

do. I am going to ask my doc if he has this Otologist thingy. It

would seem to me if he doesnt have it, then he maybe should have

refered me to one many years ago. Being I had ctoma to begin with. I

dont know if I shouls stay with my doctor or get to an Otologist or

the other kind of doctor that was mentioned. I sure would appreciate

any opinions here. I am in the 20th round of my surgeries sence 1981.

I wont know if this surgery helped till I heal more. But if I am in

the wrong hands for this condition please tell me what you think. I

dont have a problem changing doctors. Now I am baffeled as to what to

do. I really dont know much about all the surgeries. But I do know

the ctoma took every thing in my 1st surgery. My Doctor tells me what

is going on, but I do not understand half of it. I know I have an

opem mastoid, no bones,exposed facial nerves, that is about it. I am

going to ask many questions when I go back in to see my Doctor. If I

dont have any bones left, then what happens next? Oh I do wish I had

this support group through out the years. I have you now, and

hopefully I can be of help to you as well. I am going to go and enjoy

the day. Take good care till I hear from you all again! Happy

Thanksgiving!

> Hi Glenda

>

> An otologist is an ENT doctor, but one who has taken an extra

specialization dealing solely with ears - they'd do much less, if

any, nose and throat. An otologist should have more experience with a

disease like ctoma. I actually see a doctor called a neurotologist

(aka skull based surgeon). This specialization deals mostly with ear

diseases which affect the auditory and balance systems and the

cranial nerves etc .

>

> Regarding your other question about tiredness: it could just be a

factor of age of course (I'm a year younger than you and never far

from worn out LOL). Though I wondered if may be slightly of balance

or unco-ordinated at the moment. That can leave you tired, especially

the more you move around, because you're constantly having to adjust

(and may not necessarily be conscious of it) and put a little more

effort into veering off to the side and dealing with spatial co-

ordination. Certainly I had severe balance problems for a while but

after they subsided I was still generally off-balance and I was

usually exhausted from having to cope with it.

>

> Phil

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Hi Glenda,

There is no harm in getting a second opinion. I certainly sounds like

you been through a lot.

Connie

> > Hi Glenda

> >

> > An otologist is an ENT doctor, but one who has taken an extra

> specialization dealing solely with ears - they'd do much less, if

> any, nose and throat. An otologist should have more experience with a

> disease like ctoma. I actually see a doctor called a neurotologist

> (aka skull based surgeon). This specialization deals mostly with ear

> diseases which affect the auditory and balance systems and the

> cranial nerves etc .

> >

> > Regarding your other question about tiredness: it could just be a

> factor of age of course (I'm a year younger than you and never far

> from worn out LOL). Though I wondered if may be slightly of balance

> or unco-ordinated at the moment. That can leave you tired, especially

> the more you move around, because you're constantly having to adjust

> (and may not necessarily be conscious of it) and put a little more

> effort into veering off to the side and dealing with spatial co-

> ordination. Certainly I had severe balance problems for a while but

> after they subsided I was still generally off-balance and I was

> usually exhausted from having to cope with it.

> >

> > Phil

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Tom, I totally agree. We went for second opionion with otologist and it

was a different world. He showed my daugher\ter and my husband and I her

cat scan,he talked to us. He was so knowlegable. He has ten years

expereince and does around 5 a week. For anyone in the area, He is Dr.

Antonelli at Sahands in Gainesville, Fl. Plus, for us being able tko talk

to him was so important. The other practivce did not communicate. Plus,

they souldn't consider doing recosturction at first op. My surgeon said

most don't but aI am grateful that he did. We will have to have another

op. for further reconstruction in about a year. Sallie , mom to Kara, 10

with c-toma

________________________________________________________________

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-Hi Connie, yes it has been a long hard road, but I have always

stayed positive and hopefull. Now I have joined this group I have

learned a bunch in a short time. My ENT always explains to me, but

now I know about these other two kinds of Doctors, I do think I am

going to see one, starting with the Otologist, think I spelled it

right. I just dont feel as good as I think I should by now sence my

last opp. Just a strange feeling. I am giving myself more time to

heal. I have 4 more weeks visits to go to the ENT for this last opp.

The surgery before this one did not help much. So hopefully this one

works out. I am going to mention this Doc to my ENT man and see what

he says. I feel ok, just tired. I hate the waiting stage to see if

the surgery helped. My Doctor says I am healing very well, and the

mastoid looks good. I had the middle sealed on this last surgery,

maybe because it is a new opp for me, and I am not sure what I am

going to experience this time. It feels like something is in there

that I did not feel before. I will ask questions when I go back. I

am a bit nervouse this round. Not like me at all! I am still trying

to get back in the ball game here! Keep me in prayer, and thanks for

the support here! I need it! I know now I have people to talk to

that knows exatly where I am coming from. What a blessing for me!

Thank you for all you help!

-- In cholesteatoma , " Connie and Hank Schwedes "

<conniedcj@y...> wrote:

> Hi Glenda,

>

> There is no harm in getting a second opinion. I certainly sounds

like

> you been through a lot.

>

> Connie

>

>

> > > Hi Glenda

> > >

> > > An otologist is an ENT doctor, but one who has taken an extra

> > specialization dealing solely with ears - they'd do much less, if

> > any, nose and throat. An otologist should have more experience

with a

> > disease like ctoma. I actually see a doctor called a

neurotologist

> > (aka skull based surgeon). This specialization deals mostly with

ear

> > diseases which affect the auditory and balance systems and the

> > cranial nerves etc .

> > >

> > > Regarding your other question about tiredness: it could just be

a

> > factor of age of course (I'm a year younger than you and never

far

> > from worn out LOL). Though I wondered if may be slightly of

balance

> > or unco-ordinated at the moment. That can leave you tired,

especially

> > the more you move around, because you're constantly having to

adjust

> > (and may not necessarily be conscious of it) and put a little

more

> > effort into veering off to the side and dealing with spatial co-

> > ordination. Certainly I had severe balance problems for a while

but

> > after they subsided I was still generally off-balance and I was

> > usually exhausted from having to cope with it.

> > >

> > > Phil

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  • 9 months later...

Dear Rose,

I am so sorry this happened to you. I know there are 2 meds for

hyperthyroidism--Tapezole and PTU. So your doctor most likely will try you on

the other

one.

I don't know what happened to this list, but it seems rather quiet lately.

I don't know if it's the summer, or if a lot of people have dropped out. Is

anyone out there?

AntJoan

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Hi,

I'm still here...but have been traveling for a month this summer....

Fran

Re: I have a question

> Dear Rose,

>

> I am so sorry this happened to you. I know there are 2 meds for

> hyperthyroidism--Tapezole and PTU. So your doctor most likely will try

you on the other

> one.

>

> I don't know what happened to this list, but it seems rather quiet

lately.

> I don't know if it's the summer, or if a lot of people have dropped out.

Is

> anyone out there?

>

> AntJoan

>

>

>

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Same here - summer holidays have kept me busy..

K.

Re: I have a question

> Dear Rose,

>

> I am so sorry this happened to you. I know there are 2 meds for

> hyperthyroidism--Tapezole and PTU. So your doctor most likely will try

you on the other

> one.

>

> I don't know what happened to this list, but it seems rather quiet

lately.

> I don't know if it's the summer, or if a lot of people have dropped out.

Is

> anyone out there?

>

> AntJoan

>

>

>

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  • 6 months later...
Guest guest

3/16/2005, _AKHansen@..._ (mailto:AKHansen@...) writes: << So I am

wondering what kind of thing would work to make me look smoother and not so

jigglely.>>

Dear Anne,

When I had my tummy tuck they fitted me for an abdominal compression girdle

that definitely held me tight! It held me in almost 2 sizes smaller. I know

the TT makes you smaller, but this was immediately post-op while I was still

mega-swollen.

You might look up medical or compression garments in your local yellow pages

or call a local plastic surgeon's office and ask where they send patients to

purchase them.

The first one was $85.00 and looked like a Russian weight lifting suit (no

offense intended to anyone). It was straight across under the breasts and had

shoulder straps, it had eyelet hooks on both sides from chest to hips with

zippered flaps that closed up over the hooks, the legs came to mid-thighs and

it had a cutout crotch for your " convenience " ...LOL. It took 2 people to get

me into it at first, and about 5-10 minutes!

I used to tell my surgeon that he should warn patients before surgery that

he tortures them with nylon bondage suits for 6-8 weeks post-op!

All the best,

Patty H

MGB 8/25/03, Stsvl, Drs R & Cherry

I'm REALLY looking forward to the next suit. It cost me $118.00, is the same

basic design but has legs that go to mid-calves...oh boy! Leg lipo is going

to be such a joy!

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Guest guest

dear anne

try one of the " body briefers " ... you can get them at Wal mart or

almost any dept store. i have one that is all in one and includes a

bra. there is even a brand endorsed by " Weight Watchers " ! Look

around and see if you can find the softer kind that is like a satiny

smooth almost a microfiber-feeling material, but it is very firm for

support. i know this because my pannus was huge it hung to my thighs

and was hard to " cover " one of the body briefers will do well when

you ride too! another alternative is a high waist panty and a long

line bra worn together. this combo will allow you to go to the

bathroom by pulling the panties down the other " body briefer " has

closures at the crotch for bathroom access. i hope this helps--the

panties are like regular ones but when you pull them up the waist

goes up up up to under your bra a long line bra would come down just

over the panty top.

use great undies and wear any dress, pants outfit , etc that you

please!

good luck!

cathy s in va

>

>

> Hi all,

> I had my original MGB on 1/26/04 and a revision on 2/11/05. I am

> doing okay, not completely back 100% yet, but things are going

well.

> This is my question. I have/had a lot of waist fat and a large

> hanging pouch. My daughter is getting married in a couple of

months

> and I would like to look smoother and have clothes that fit

better.

> I still have to wear a large size to go over my abdomen/pouch. The

> legs of pants are huge on me. So I am wondering what kind of thing

> would work to make me look smoother and not so jigglely. I am

> thinking along the lines of support clothing type of thing.

> And the last part of this is that I have horses and started to ride

> again last fall. I am finding that the fat moves all at one time

> around the waist. I need some major support.

> Thanks

> Anne Hansen

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  • 3 months later...
Guest guest

Twisted...

My personal opinion is that some doctors, who haven't been adequately

trained, can't or won't diagnose flatback, either because they truly

don't know about it, or they don't know how to treat it. If they

don't know about it, than I wouldn't let them near me. If they don't

know how to treat it, they should refer you elsewhere. I wouldn't

expect anyone other than a spine surgeon to know about or treat

flatback.

If you want to stick with your current physician, you might want to

print out abstracts for some of the published journal articles on

flatback, and bring them with you to your next appointment. You can

find links to just about all the articles here:

http://www.scoliosislinks.com/Flatback.htm

Where are you located?

--

> I've been reading your posts for about 2 yrs now. I see all the

> amazing results you guys have and I wonder what is wrong with the

> medical community where I live. No one, not the orthopods,

> neurosurgeons, pain docs or regular GP know a thing about " flat back "

> or if they do they don't mention it or talk about it.

> Everytime I have a complaint they want to treat the symptom and not

> the problem. I have had an anterior cervical fusion this past

> November along with facet joint injections at L2 this past week. My

> orthopod wants to take the rod out but will not put another one in

> which just scares me to death that my spine will start to curve

> again. I had my harrington rod placed when I was 14 in 1974. I did

> wonderfully until I turned about 40 and I started becoming a walking

> encyclopedia for back problems. How do you convince a doc that you

> have a problem that they either won't accept as a diagnosis or are

> not aware even exists. My day is filled with pain and the pain doc

> says that pain is now the disease. I will not accept this. I have

> to work to support my family and disability is not an option.

> Traveling out of state to a physician is not an option either. HMO

> would have a cow. I was reared by a wonderful mom who was old school

> RN. You didn't complain about pain and the doc was always right. It

> has taken awhile but I now know that this is not true. I listen very

> carefully to what they are saying and not saying. It is almost a

> conspiracy not to tell someone that they have this problem. Is it

> lawyers? The fear of litigation. Are they protecting their peers who

> performed this surgery or are they just ignorant of the problem.

> What do you do to address this problem and make them see the light?

> The docs measured my x-rays and last year I was more that a 2 cmm off

> from the plane. I continued to lean forward with numbness in legs

> and arms now. Tell me how you got a doctor to fight for your needs.

> Thanks.

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Guest guest

Twisted,

I think in reality it is you, not the doctor, who needs to fight for

your needs. As you say, the medical community is not very reponsive

sometimes...and I think even less so when they don't feel they can

help you.

You sound like you are pretty convinced you have flatback. Your

symptoms sound in line with that...did you come right out ask your

doctor if he thinks you do?

As to what you might need to do to find qualified help...well, I

think in the files section you will find a piece that Elizabth wrote

where she lays out very thoughtfully the reasons for finding a

surgeon who knows what they are doing.

I realize that money doesn's grow on trees and that your HMO is a

limiting factor. I would still recommend you scrape together the

money to get an opinion from a doctor experienced in HARMS, even if

it means you have to foot the bill yourself. Dr Boachie's consult

cost me $500.00 and was worth every penny. At least you will have

confidence going forward that you are not loosing your mind and your

pain has a specific cause. It might allow you to find a way get off

the " treat the symtoms " not the " problem " merry-go-round you are on.

If you have been reading this board for two years this is probably

not a new idea...maybe you were just venting...but I agree with

, I don't know what the point of staying with your current

doctor is...you certainly wouldn't let him revise you since up til

now he probably has never done a revision....I would think it is

time to force your HMO to let you seek the help you need. The

alternative is that things are probably not going to improve on

their own.

Just my humble opinion. Cam

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Guest guest

Twisted...

If it's just validation, you can actually buy an internet opinion from

Pashman:

http://www.espine.com/purchase.html

I'm not sure about the cost. It used to be $75.

And, although I actually haven't had any good reports on Dr. Pashman,

he did a fellowship with Bradford at UCSF, so he got to see a

lot of flatback cases at that time.

It might be worth the $ if you can get your HMO to look at the opinion

and send you to someone who has experience treating flatback.

Regards,

> Twisted,

>

> I think in reality it is you, not the doctor, who needs to fight for

> your needs. As you say, the medical community is not very reponsive

> sometimes...and I think even less so when they don't feel they can

> help you.

>

> You sound like you are pretty convinced you have flatback. Your

> symptoms sound in line with that...did you come right out ask your

> doctor if he thinks you do?

>

> As to what you might need to do to find qualified help...well, I

> think in the files section you will find a piece that Elizabth wrote

> where she lays out very thoughtfully the reasons for finding a

> surgeon who knows what they are doing.

>

> I realize that money doesn's grow on trees and that your HMO is a

> limiting factor. I would still recommend you scrape together the

> money to get an opinion from a doctor experienced in HARMS, even if

> it means you have to foot the bill yourself. Dr Boachie's consult

> cost me $500.00 and was worth every penny. At least you will have

> confidence going forward that you are not loosing your mind and your

> pain has a specific cause. It might allow you to find a way get off

> the " treat the symtoms " not the " problem " merry-go-round you are on.

>

> If you have been reading this board for two years this is probably

> not a new idea...maybe you were just venting...but I agree with

> , I don't know what the point of staying with your current

> doctor is...you certainly wouldn't let him revise you since up til

> now he probably has never done a revision....I would think it is

> time to force your HMO to let you seek the help you need. The

> alternative is that things are probably not going to improve on

> their own.

>

> Just my humble opinion. Cam

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Guest guest

Cam,

I agree wholeheartedly, with one qualification:

Good luck fighting the HMO! Of course other HMOs may be more

reasonable then mine. Aetna HMO was incredibly obstinate, and I do

not even want to detail all the irregularities and specious

arguments I encountered while appealing my case, with sound

arguments and ample documentation, all the way to " independent "

medical review. Sadly, my state's Insurance Department had to be

goaded and nudged incessantly to help at all and dropped my case

completely once I got denied at the final stage of review.

I finally had to sign up for a much more expensive PPO which enabled

me to have surgery in Boston with Dr. Rand.

Then I went back to Aetna HMO, via my ex-spouse who had also

temporarily paid the premiums for the PPO. Fortunately by the time I

needed more revision, I had discovered Dr. Ondra here in Chicago,

and so had Aetna.

(Sigh.)

Best,

> Twisted,

>

> I think in reality it is you, not the doctor, who needs to fight

for

> your needs. As you say, the medical community is not very

reponsive

> sometimes...and I think even less so when they don't feel they can

> help you.

>

> You sound like you are pretty convinced you have flatback. Your

> symptoms sound in line with that...did you come right out ask your

> doctor if he thinks you do?

>

> As to what you might need to do to find qualified help...well, I

> think in the files section you will find a piece that Elizabth

wrote

> where she lays out very thoughtfully the reasons for finding a

> surgeon who knows what they are doing.

>

> I realize that money doesn's grow on trees and that your HMO is a

> limiting factor. I would still recommend you scrape together the

> money to get an opinion from a doctor experienced in HARMS, even

if

> it means you have to foot the bill yourself. Dr Boachie's consult

> cost me $500.00 and was worth every penny. At least you will have

> confidence going forward that you are not loosing your mind and

your

> pain has a specific cause. It might allow you to find a way get

off

> the " treat the symtoms " not the " problem " merry-go-round you are

on.

>

> If you have been reading this board for two years this is probably

> not a new idea...maybe you were just venting...but I agree with

> , I don't know what the point of staying with your current

> doctor is...you certainly wouldn't let him revise you since up til

> now he probably has never done a revision....I would think it is

> time to force your HMO to let you seek the help you need. The

> alternative is that things are probably not going to improve on

> their own.

>

> Just my humble opinion. Cam

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  • 4 months later...

Hi ,

I understand you perfectly, I think the reason for the delay is that

you are using the group message board to post your messages. I send

all my messages to the group mailbox. I am not sure if you receive

messages individually or in the digest (all messages for the a single

day in one listed eMail message) so it depends on which you are

getting now. If you receive each message individually simply click

" Reply " in your eMail program and the original message will be copied

and you can type your reply on top of it then just hit send. How every

if you receive the digest it is best to " Cut & Paste " the original

message then start a new eMail and paste just the message you are

replying to with your comments added and eMail that to the group mail

box. The address for the group mailbox is HYPERLINK

" mailto: " . That is the

method I use. I hope I explained this well enough, it is hard to be

really specific as I am not sure what eMail program you use or which

method you use to receive the CI Hear messages. If you are not sure

what I am trying to explain let me know what eMail and word processing

programs you use and I will write you up a little step by step cheat

sheet.

Regards

Mike " Ears Hopin " P

Implanted June 3rd, 2005

Activated July 6th, 2005

Nucleus Freedom

_____

From: NORMAN GARDNER [mailto:normgard@...]

Sent: Wednesday, November 09, 2005 11:23 AM

gigabyte@...

Subject: I have a question

Hi ,

Thank you for your post on CI hear. I do have a question....

When I read the CI Digest I can tell people are reading the posts and

responding right away. I read the posts then go to CI Hear and post a

response and it comes out the next day. How to I respond to a post

and have it come out the same time the question or comments are made?

I am not even sure I am making sense of all this.

Thanks!

--

« Giga ‡ scanned » message CLEAN

Checked by AVG Free Edition.

Version: 7.1.362 / Virus Database: 267.12.8/163 - Release Date:

11/8/2005

--

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.1.362 / Virus Database: 267.12.8/163 - Release Date:

11/8/2005

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  • 1 month later...

>where I can purchase a 5 gallon can of gray paint?<

Do you mean a 5 gallon bucket? (or are you planning to compete in a

grafitti wall project and the outcome will be only seen if China?) I

checked 's Secret website, but it seems they've discontinued

that particular item.

Did you try your local paint store? Or large hardware stores like

Lowes? Although they only list white online I'm sure they can mix any

shade of gray you desire.

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  • 1 month later...

Dear Jade,

I think I would at least do it yearly! That's what my gastro does. Of course I wasn't lucky enough to go SVR. I think my friend has his done about every six mos. he went SVR. I think it's important to us to know where we stand with this disease. I am sure if you talked to your reg. physcian he would gladly have it done.

Teri

I have a question

how often should I get retested for Hep C to see if it has come back..... it's like my DR has forgotten all about me now...... do I have to go to a Gastrologist to get tested or can I go to my family physician?

Jade

I got off treatments in 2004 and my DR has tested me twice..... but I haven't heard from him since the end of 2004 or so.....

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