Re: RE: In a state of shock!!! What next? HELP!!!

[Guest guest]

Well if the following isn't something I don't know

what is? It landed me in the mental ward for an evaul

and I was finally given something to calm down after

staying up all night Friday and half the day Saturday.

I was prescribed Ambien to sleep. Shirley, as always

was quite the friend yet again! Love ya sis! Needless

to say she is very upset as well, as you may well

imagine after watching all this unfold after 4 years.

I guess it is one way to get a diagnois! I guess I

should be thankful for that. Now to find out if it is

the hepatitis and/or the Sjogren's that I'm flaring

over? Anyhow, I'm trying to hang in there! I wish

everyone the best and certainly pray that your

week-end was much better than ours! Take care. Kim

--- ksamedifference <ksamedifference@...> wrote:

>

> >

> > Well, many of you are familar with my on-going

> saga and My update

> is

> > something out of a horror movie, I received a

> letter today from

> the

> > Dept. of Health in another state entitled

> " Confidential Disease

> > Report " , which goes on to state that I am

> Sjogren's +, Hepatitis B

> &

> > C+. After going into a state of shock b4

> comprehending anything I

> was

> > reading - I finally was reassured that it must

> just be from my

> > antibodies to the Hep B series. Upon further

> examination on

> another

> > supplemental form it states Hep C AB Reactive

> method unknown or

> > something of that nature and Anti-HBs is positive,

> HBsAg is

> negative,

> > Anti-HBc is negative, IgM Anti-HBc is negative

> indicating only

> > antibodies to Hep B via Hep B vaccination. The

> Hep C AB is a new

> one

> > on me. As you may recll I tested positive b4 for

> SSB and had

> called

> > and inquired about my blood test results back in

> August. I then

> went

> > to my doc here and went over the results faxed and

> was told all was

> a-

> > ok, I then upon further evaulation of the fax Went

> Back in to my

> doc

> > to inform him what I noticed about the SSB, etc...

> to be told all

> was

> > well even after supposidly conversing with the

> testing doctor on my

> > previous visit. I have been told for years that I

> am hysterical and

> > that I have the RF+ and that is normal but I can't

> get rid of it.

> I

> > then called back to Wyoming to be told all my lab

> values were fine

> by

> > the Lab staff, The Nurse and some other gal all on

> seperate

> occasions

> > and therefore assumed all was well except for the

> +SSB even after

> > being told that means nothing!!!!!!! I have been

> in counseling to

> > document all of this and that I am and have been

> sick and that I am

> > not being taken seriously and they are convinced

> that I'm

> delusional

> > and paranoid. I am hysterical especially at this

> very moment as my

> > mother just died and I amounted to nothing and now

> I am faced with

> > losing my father by way of the fact that I must

> have Hep C as he is

> > the retired State Epidemologist of Infectious

> Disease here in the

> > state that I am currently living and isn't that

> just a fine kettle

> of

> > fish! After I gained some sense of self composure

> I called my Doc's

> > office here to make an appointment and when asked

> why I felt I

> needed

> > an appointment I lost it and informed the gal that

> I had been in on

> > several occasions about the blood test result

> amoung other things

> and

> > that I needed to be tested right away and she

> couldn't get me in

> > until Monday which should just go great with my

> borderline thinking

> > of good/bad, black/white, not knowing isn't part

> of something I am

> > able to cope too well with. I asked to see someone

> else and I

> either

> > have to see my doc or his assistant, she asked why

> I thought I

> needed

> > to be tested? I then told her that I just got a

> letter from

> another

> > state informing me that I have an infectious

> disease and so I

> better

> > at the very least comply with the CDC rules. In my

> wildest dreams I

> > would of never come up with hepatitis, I seen it

> under RF+ related

> > testing and never imagined to look as it wasn't a

> possibility. Now

> > it is more than a possibility - it is a reality.

> I'm sorry that I

> am

> > so long winded and that I have asked so many

> queations about so

> many

> > other illnesses taking away from so many here.

> I'm so embarrassed,

> > scared, confused and a bit angry too, I suppose.

> Anyhow, I am

> sorry

> > for all the time spent questioning about unrelated

> stuff and I

> thank

> > everyone for all the kind words, the support, the

> research, etc...

> > You all are such an exemplary group of

> individuals! I always felt

> at

> > ease with all of you and the compassion and

> empathy have been my

> life

> > line for months now. I don't know if Sjogren's is

> associated with

> > Hepatitis or what. I doubt I will learn much from

> the doc. I

> don't

> > know if I have any illnesses that would classify

> me to remain in

> this

> > group? Sorry for venting yet again. Thanks for

> listening and

> thanks

> > for all that you do! Love ya guys! If anyone has

> any words of

> > wisdom or advice...PLEASE " bring it willy " as the

> saying goes! I

> > wish well to all! As always take care and God

> Bless! Kim

> >

>

>

>

>

>

__________________________________________________

[Guest guest]

Kim,

I'm so sorry to hear all of this. You shouldn't be embarrassed though. And

of course you can stay in the group if you wish to.

It's true that many people with hepatitis C are rheumatoid factor positive.

It's a source of diagnostic confusion.

It is thought that there is a link between Sjogren's syndrome and hepatitis

C, but it's not completely understood.

Here's a recent abstract that describes the possibility of hepatitis C

associated Sjogren's syndrome:

************************

2005 Mar;84(2):81-9.

Sjogren syndrome associated with hepatitis C virus: a multicenter analysis

of 137 cases.

Ramos-Casals M, Loustaud-Ratti V, De Vita S, Zeher M, Bosch JA, Toussirot E,

Medina F, s J, Anaya JM, Font J; SS-HCV Study Group.

Department of Autoimmune Diseases, Hospital Clinic, Institut

d'Investigacions Biomediques August Pi i Sunyer (IDIBAPS), School of

Medicine, University of Barcelona, Barcelona, Spain. mramos@...

To define the clinical and immunologic pattern of expression of Sjogren

syndrome (SS) associated with chronic hepatitis C virus (HCV) infection, we

conducted a multicenter study aiming to collect a large number of patients

with SS and HCV infection. Inclusion criteria were the fulfillment of at

least 4 of the classification criteria for SS proposed by the European

Community Study Group and repeated positive HCV serology, confirmed by

recombinant immunoblot assay and/or detection of serum HCV-RNA by polymerase

chain reaction.

One hundred thirty-seven patients were included (104 female

and 33 male; mean age, 65 yr). Seventy-nine (58%) patients presented a

systemic process with diverse extraglandular manifestations, with articular

involvement (44%), vasculitis (20%), and neuropathy (16%) being the most

frequent features observed. The main immunologic features were antinuclear

antibodies (65%), hypocomplementemia (51%), and cryoglobulinemia (50%).

Cryoglobulins were associated with a higher frequency of cutaneous

vasculitis, rheumatoid factor, and hypocomplementemia. Thirty-two (23%)

patients had positive anti-Ro/SS-A and/or anti-La/SS-B antibodies; these

patients were predominantly women and had a higher prevalence of some

extraglandular features and a lower frequency of liver involvement. Nineteen

(14%) patients developed neoplasia, with hematologic neoplasia (8 cases) and

hepatocellular carcinoma (6 cases) being the most frequent types.

Eighty-five percent of SS-HCV patients also fulfilled the recently proposed

2002 classification criteria for SS.In conclusion, HCV-associated SS is

indistinguishable in most cases from the primary form using the most recent

set of classification criteria. Chronic HCV infection should be considered

an exclusion criterion for the classification of primary SS, not because it

mimics primary SS, but because the virus may be implicated in the

development of SS in a specific subset of patients. We propose the term " SS

secondary to HCV " when these patients fulfill the 2002 classification

criteria for SS.

PMID: 15758837

************************

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dopt=Abstra\

ct & list_uids=15758837 & itool=iconabstr & query_hl=5

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] RE: In a state of shock!!! What next? HELP!!!

> Well, many of you are familar with my on-going saga and My update is

> something out of a horror movie, I received a letter today from the

> Dept. of Health in another state entitled " Confidential Disease

> Report " , which goes on to state that I am Sjogren's +, Hepatitis B &

> C+. After going into a state of shock b4 comprehending anything I was

> reading - I finally was reassured that it must just be from my

> antibodies to the Hep B series. Upon further examination on another

> supplemental form it states Hep C AB Reactive method unknown or

> something of that nature and Anti-HBs is positive, HBsAg is negative,

> Anti-HBc is negative, IgM Anti-HBc is negative indicating only

> antibodies to Hep B via Hep B vaccination. The Hep C AB is a new one

> on me. As you may recll I tested positive b4 for SSB and had called

> and inquired about my blood test results back in August. I then went

> to my doc here and went over the results faxed and was told all was a-

> ok, I then upon further evaulation of the fax Went Back in to my doc

> to inform him what I noticed about the SSB, etc... to be told all was

> well even after supposidly conversing with the testing doctor on my

> previous visit. I have been told for years that I am hysterical and

> that I have the RF+ and that is normal but I can't get rid of it. I

> then called back to Wyoming to be told all my lab values were fine by

> the Lab staff, The Nurse and some other gal all on seperate occasions

> and therefore assumed all was well except for the +SSB even after

> being told that means nothing!!!!!!! I have been in counseling to

> document all of this and that I am and have been sick and that I am

> not being taken seriously and they are convinced that I'm delusional

> and paranoid. I am hysterical especially at this very moment as my

> mother just died and I amounted to nothing and now I am faced with

> losing my father by way of the fact that I must have Hep C as he is

> the retired State Epidemologist of Infectious Disease here in the

> state that I am currently living and isn't that just a fine kettle of

> fish! After I gained some sense of self composure I called my Doc's

> office here to make an appointment and when asked why I felt I needed

> an appointment I lost it and informed the gal that I had been in on

> several occasions about the blood test result amoung other things and

> that I needed to be tested right away and she couldn't get me in

> until Monday which should just go great with my borderline thinking

> of good/bad, black/white, not knowing isn't part of something I am

> able to cope too well with. I asked to see someone else and I either

> have to see my doc or his assistant, she asked why I thought I needed

> to be tested? I then told her that I just got a letter from another

> state informing me that I have an infectious disease and so I better

> at the very least comply with the CDC rules. In my wildest dreams I

> would of never come up with hepatitis, I seen it under RF+ related

> testing and never imagined to look as it wasn't a possibility. Now

> it is more than a possibility - it is a reality. I'm sorry that I am

> so long winded and that I have asked so many queations about so many

> other illnesses taking away from so many here. I'm so embarrassed,

> scared, confused and a bit angry too, I suppose. Anyhow, I am sorry

> for all the time spent questioning about unrelated stuff and I thank

> everyone for all the kind words, the support, the research, etc...

> You all are such an exemplary group of individuals! I always felt at

> ease with all of you and the compassion and empathy have been my life

> line for months now. I don't know if Sjogren's is associated with

> Hepatitis or what. I doubt I will learn much from the doc. I don't

> know if I have any illnesses that would classify me to remain in this

> group? Sorry for venting yet again. Thanks for listening and thanks

> for all that you do! Love ya guys! If anyone has any words of

> wisdom or advice...PLEASE " bring it willy " as the saying goes! I

> wish well to all! As always take care and God Bless! Kim

[Guest guest]

Kim,

I'm sorry for all you're going through to find out what is wrong with

you.

Hopefully this letter will make your doctor take you more seriously and

do the necessary testing.

Of course you can stay in our group no matter what your diagnosis is.

I can imagine how upsetting this news is.

a

On Dec 18, 2005, at 8:40 AM, ksamedifference wrote:

>

> >

> > Well, many of you are familar with my on-going saga and My update

> is

> > something out of a horror movie, I received a letter today from

> the

> > Dept. of Health in another state entitled " Confidential Disease

> > Report " , which goes on to state that I am Sjogren's +, Hepatitis B

> &

> > C+. After going into a state of shock b4 comprehending anything I

> was

> > reading - I finally was reassured that it must just be from my

> > antibodies to the Hep B series. Upon further examination on

> another

> > supplemental form it states Hep C AB Reactive method unknown or

> > something of that nature and Anti-HBs is positive, HBsAg is

> negative,

> > Anti-HBc is negative, IgM Anti-HBc is negative indicating only

> > antibodies to Hep B via Hep B vaccination. The Hep C AB is a new

> one

> > on me. As you may recll I tested positive b4 for SSB and had

> called

> > and inquired about my blood test results back in August. I then

> went

> > to my doc here and went over the results faxed and was told all was

> a-

> > ok, I then upon further evaulation of the fax Went Back in to my

> doc

> > to inform him what I noticed about the SSB, etc... to be told all

> was

> > well even after supposidly conversing with the testing doctor on my

> > previous visit. I have been told for years that I am hysterical and

> > that I have the RF+ and that is normal but I can't get rid of it.

> I

> > then called back to Wyoming to be told all my lab values were fine

> by

> > the Lab staff, The Nurse and some other gal all on seperate

> occasions

> > and therefore assumed all was well except for the +SSB even after

> > being told that means nothing!!!!!!! I have been in counseling to

> > document all of this and that I am and have been sick and that I am

> > not being taken seriously and they are convinced that I'm

> delusional

> > and paranoid. I am hysterical especially at this very moment as my

> > mother just died and I amounted to nothing and now I am faced with

> > losing my father by way of the fact that I must have Hep C as he is

> > the retired State Epidemologist of Infectious Disease here in the

> > state that I am currently living and isn't that just a fine kettle

> of

> > fish! After I gained some sense of self composure I called my Doc's

> > office here to make an appointment and when asked why I felt I

> needed

> > an appointment I lost it and informed the gal that I had been in on

> > several occasions about the blood test result amoung other things

> and

> > that I needed to be tested right away and she couldn't get me in

> > until Monday which should just go great with my borderline thinking

> > of good/bad, black/white, not knowing isn't part of something I am

> > able to cope too well with. I asked to see someone else and I

> either

> > have to see my doc or his assistant, she asked why I thought I

> needed

> > to be tested? I then told her that I just got a letter from

> another

> > state informing me that I have an infectious disease and so I

> better

> > at the very least comply with the CDC rules. In my wildest dreams I

> > would of never come up with hepatitis, I seen it under RF+ related

> > testing and never imagined to look as it wasn't a possibility. Now

> > it is more than a possibility - it is a reality. I'm sorry that I

> am

> > so long winded and that I have asked so many queations about so

> many

> > other illnesses taking away from so many here. I'm so embarrassed,

> > scared, confused and a bit angry too, I suppose. Anyhow, I am

> sorry

> > for all the time spent questioning about unrelated stuff and I

> thank

> > everyone for all the kind words, the support, the research, etc...

> > You all are such an exemplary group of individuals! I always felt

> at

> > ease with all of you and the compassion and empathy have been my

> life

> > line for months now. I don't know if Sjogren's is associated with

> > Hepatitis or what. I doubt I will learn much from the doc. I

> don't

> > know if I have any illnesses that would classify me to remain in

> this

> > group? Sorry for venting yet again. Thanks for listening and

> thanks

> > for all that you do! Love ya guys! If anyone has any words of

> > wisdom or advice...PLEASE " bring it willy " as the saying goes! I

> > wish well to all! As always take care and God Bless! Kim

> >

>

>

>

>

>

>

>