Re: New here: Auto immune tests are positive

[Guest guest]

Hi Betty. How are you? I read your note and was

confused as to how your rheumy doesn't know about the

anti-scl 70? That seems a lttle bizarre. You have

come to the right site though...the info provided by

a and is fantastic and the people here are

beyond words!!! They are my lifeline literally! A lot

of us are flaring these days so things on the site are

kinda slow. However, I'm more than positive that

a and/or can hook you up with info that you

need!!!! Please be patient and they will get to you

soon, I promise. I know while looking for answers -

being patient can be somewhat challenging, but hang in

there!!!! In the mean time... the anti-Scl 70 is a

test that is an ENA=Extratable Nuclear Antigen? with a

specificity for (PSS) = Progressive Systemic Sclerosis

classified in two types:Diffuse and Limited. I think

but am not a 100% sure that it is aka Scleroderma?

Anti-Scl 70 is RARELY found in SLE=Lupus and

MCTD=Mixed Connective Tissue Disease. You might check

out a few sites in the mean time while waiting on your

reply here. Some sites that might be helpful are

www.sclero.org -or http.www.emedicine.com/med/topics

2076, 2197, and 677 or www.niams.nih.gov and check

Raynaud and PSS or Sleroderma. As for the anti-scl 70

test you can go to

corgenixonline.com/package_inst.pdf/11620%2000%20reaads%anti%20scl70.pdf#search=\

scl%20test

or www.corgenixonline.com/product_info.pdf/catalog

reaads anti scl 70.pdf I found these by typing in

either anti-scl 70 test and progressive systemic

sclerosis and raynaud in the search bar. Good luck

and hang in there. Take care an Welcome to the

group!!! Kim

--- Betty <bvanOmega@...> wrote:

> I have had an annoying cough for several years

> which my GP helps me

> with. I have also had self-diagnosed (mild)

> Raynauds which I have

> tried to ignore. December the cough became such

> that I had to seek

> further help with it. A lung biopsy showed multiple

> nodules in both

> lungs but the pulmonary doctor said that would not

> cause the cough.

> Although just tonight I have read enough to think

> Raynauds could do

> that. I will have another Ctscan in 2 months to

> check on the

> nodules. But the pulmonary doctor did labs that

> came back positive

> for autoimmune problems and referred me to a

> Rheumatologist. The scl

> 70 was 158 with a normal range of <100. The

> Rheumatologist looked at

> the report and said she didn't know anything about

> that test. She

> also didn't know about the other tests that were

> positive. So she

> did her own. As to the results of her test she just

> said she had

> screened me for Lupus and it was negative. I don't

> think Lupus is

> that easily eliminated and the scl 70 looks like

> scleraderma to me.

> The Rheumatologist is adopting a wait and see

> attitude.

>

> Meanwhile the Raynauds has gotten bad. The first

> thing I did on this

> site was query for Raynauds and right away found

> pictures of hands.

> If that were my hands when they had flared it would

> be a good day.

> And it extends to my wrist. It is very difficult

> for me to do

> anything when they are like that. It is a problem

> and to cap that

> off I met a man who is being amputated bit by bit

> because of

> Raynauds. Toes, more toes, foot, fingers and it

> seems to just

> progress. That with how difficult it is to use my

> hands have made me

> think I had better find out about it and see what

> can be done. My

> feet had been the problem but blamed that on

> neuropathy. The same

> discoloration problems are in my feet but is there

> more often than

> not. My hands hurt some but my feet have been very

> painful. I had

> gone to a Neurologist for them with no help. While

> my feet look the

> same in color and such the feelings are not anywhere

> near the same.

> At this point I think it is neuropathy with Raynauds

> thrown in for

> good measure.

>

> I am looking for information and find there is much

> I want to know.

> I was told this is a good forum and that is what I

> am finding though

> I have not had time to read much here tonight.

> Bvan (Betty)

>

>

>

>

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Betty, welcome!

I'm very sorry to hear that you are having such problems. I would

seek the opinion of another rheumatologist.

>

> I have had an annoying cough for several years which my GP helps

me

> with. I have also had self-diagnosed (mild) Raynauds which I have

> tried to ignore. December the cough became such that I had to seek

> further help with it. A lung biopsy showed multiple nodules in

both

> lungs but the pulmonary doctor said that would not cause the

cough.

> Although just tonight I have read enough to think Raynauds could do

> that. I will have another Ctscan in 2 months to check on the

> nodules. But the pulmonary doctor did labs that came back positive

> for autoimmune problems and referred me to a Rheumatologist. The

scl

> 70 was 158 with a normal range of <100. The Rheumatologist looked

at

> the report and said she didn't know anything about that test. She

> also didn't know about the other tests that were positive. So she

> did her own. As to the results of her test she just said she had

> screened me for Lupus and it was negative. I don't think Lupus is

> that easily eliminated and the scl 70 looks like scleraderma to

me.

> The Rheumatologist is adopting a wait and see attitude.

>

> Meanwhile the Raynauds has gotten bad. The first thing I did on

this

> site was query for Raynauds and right away found pictures of hands.

> If that were my hands when they had flared it would be a good day.

> And it extends to my wrist. It is very difficult for me to do

> anything when they are like that. It is a problem and to cap that

> off I met a man who is being amputated bit by bit because of

> Raynauds. Toes, more toes, foot, fingers and it seems to just

> progress. That with how difficult it is to use my hands have made

me

> think I had better find out about it and see what can be done. My

> feet had been the problem but blamed that on neuropathy. The same

> discoloration problems are in my feet but is there more often than

> not. My hands hurt some but my feet have been very painful. I had

> gone to a Neurologist for them with no help. While my feet look

the

> same in color and such the feelings are not anywhere near the

same.

> At this point I think it is neuropathy with Raynauds thrown in for

> good measure.

>

> I am looking for information and find there is much I want to

know.

> I was told this is a good forum and that is what I am finding

though

> I have not had time to read much here tonight.

> Bvan (Betty)

>

[Guest guest]

Thanks to all for your welcome and search tips. I was searching for

information and a group such as this but I did not think of

checking under " RA " . A special thanks you to Sue for directing me

here. When I started my search with information here I found too

much to read in one evening.

The test that the rheumatologist did is so vague I didn't know how to

include it with my first post. 1st line: Antinuclear antibody

2nd line antibody titer liver-weakly pos 1:20 2nd line: pattern

speckled pattern 3rd line: comment HEP-2POS-1:40 4th line comment

speckled pattern.

Usually I can read lab reports. I did find that " speckled " may or

may not indicate anything. Does any of this make sense to you. She

also did a Sed rate 51 with norm 0-30. Several years ago I had seen

this doctor because at that time the sed rate was much higher. After

being on prednisone for a few months it was still above normal. So

her comment to this sed rate was that mine was always up.

The lab report for the scl70 antibody said they would hold the sample

for 30 days and suggested several other tests done on it. That report

did include a rheumatoid factor that was 8 in a range of 1-20.

Nothing else that I could see on those test were in range. Since she

didn't even know about that test naturally she didn't order the other

tests.

The Raynauds has only been bad for about 1 month. Before that it was

not significant. I had meant to talk to the Rheu about that but

forgot. When I got home and remember that I called her office and

she said if I wanted to come back before the scheduled apt. to do

so. I have an apt. with my GP tomorrow and wanted to have something

more definite when I see him but with my most recent information find

I have been so overwhelmed I am not coming up with anything

specific.

I find doctors seem to know so little even in their specific

category. But I think it interesting that the pulmonary doc knew

more about this than the rheumtologist does.

I now have a list of autoimmune positive test. I am pretty well

knowledgeable about diabetes but just prior to these test I had asked

my GP who is handling my diabetes for a specific test to determine

about the diabetes. He did not know about the test but did it. It

came back positive just before I got these other reports. Between

all these test I have been spending a lot of time on this.

It's hard to get a medical degree in a couple months! The advice

regarding Raynauds was " keep warm " . I don't know if it would be of

any use to go back just to talk to her about the Raynauds. What can

be done anyway?

Sorry about such long post, but any information from any of you is

welcomed.

Bvan (Betty)

> >

> > I have had an annoying cough for several years which my GP helps

> me

> > with. I have also had self-diagnosed (mild) Raynauds which I

have

> > tried to ignore. December the cough became such that I had to

seek

> > further help with it. A lung biopsy showed multiple nodules in

> both

> > lungs but the pulmonary doctor said that would not cause the

> cough.

> > Although just tonight I have read enough to think Raynauds could

do

> > that. I will have another Ctscan in 2 months to check on the

> > nodules. But the pulmonary doctor did labs that came back

positive

> > for autoimmune problems and referred me to a Rheumatologist. The

> scl

> > 70 was 158 with a normal range of <100. The Rheumatologist

looked

> at

> > the report and said she didn't know anything about that test.

She

> > also didn't know about the other tests that were positive. So

she

> > did her own. As to the results of her test she just said she had

> > screened me for Lupus and it was negative. I don't think Lupus

is

> > that easily eliminated and the scl 70 looks like scleraderma to

> me.

> > The Rheumatologist is adopting a wait and see attitude.

> >

> > Meanwhile the Raynauds has gotten bad. The first thing I did on

> this

> > site was query for Raynauds and right away found pictures of

hands.

> > If that were my hands when they had flared it would be a good

day.

> > And it extends to my wrist. It is very difficult for me to do

> > anything when they are like that. It is a problem and to cap

that

> > off I met a man who is being amputated bit by bit because of

> > Raynauds. Toes, more toes, foot, fingers and it seems to just

> > progress. That with how difficult it is to use my hands have

made

> me

> > think I had better find out about it and see what can be done.

My

> > feet had been the problem but blamed that on neuropathy. The

same

> > discoloration problems are in my feet but is there more often

than

> > not. My hands hurt some but my feet have been very painful. I

had

> > gone to a Neurologist for them with no help. While my feet look

> the

> > same in color and such the feelings are not anywhere near the

> same.

> > At this point I think it is neuropathy with Raynauds thrown in

for

> > good measure.

> >

> > I am looking for information and find there is much I want to

> know.

> > I was told this is a good forum and that is what I am finding

> though

> > I have not had time to read much here tonight.

> > Bvan (Betty)

> >

>

[Guest guest]

Gena,

If I need a Rheumatologist, I need a different one. My GP gave me a

copy of her report to him. In essence she says I don't have anything

except MAYBE a LITLLE capillaries showing through in my feet. Had

the problem not been so clearly showing through when I was in her

office I could understand. But when I was there it was very plain to

see. She had me schedule for a repeat in 3 months but I don't see

any point in that.

Several of my recent lab studies indicate autoimmune problems and the

accumulation of them bothers me. About 4 months ago I had a minor

surgical procedure that required light anesthesia. Th oxygen alarm

kept going off and when I asked about it they turned the sound off.

Later the anesthesiologist told me I should see someone about the

Raynauds. Later when I had the lung biopsy I was out more and was not

aware of how it went during the procedure but in recovery they could

not find an oxygen monitor, I don't know what it is called,

that " worked " . When the couple in the room didn't work they moved me

to another room. There they changed leads to the machine and that

day none of the machines were working. Strange!.

No of course I don't have Raynauds!

A good help with Raynauds could be move south…but I'm already there.

Actually I am in North FL My daughter lives at the very south tip of

FL. Wonder if I could move in with her. (just kidding of course).

It is cold here today 40ish, but that is cold. We went out for

lunch. There is some wind, and rain more like a mist. Brrrrr.

BVan (Betty)

--- In , " " <Matsumura_Clan@...>

wrote:

>

> Betty, your sed rate and the Scl-70 results are the only ones that

sound

> significantly elevated.

>

> You should seek the opinion of another rheumatologist, preferably

one who

> knows something about scleroderma.

>

> As for the Raynaud's, keeping warm is important because it can

prevent

> attacks and subsequent damage. Each attack may not only be

affecting your

> hand;, some researchers theorize that it can also affect your

internal

> organs.

>

> If you are currently a smoker, it is imperative that you stop.

>

>

> a has a lot of good information on the labs here:

>

> http://arthritissupport.info/Lab%20Tests.html

>

>

>

>

> 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: New here: Auto immune tests are positive

>

>

> > Thanks to all for your welcome and search tips. I was searching

for

> > information and a group such as this but I did not think of

> > checking under " RA " . A special thanks you to Sue for directing me

> > here. When I started my search with information here I found too

> > much to read in one evening.

> >

> > The test that the rheumatologist did is so vague I didn't know

how to

> > include it with my first post. 1st line: Antinuclear antibody

> > 2nd line antibody titer liver-weakly pos 1:20 2nd line:

pattern

> > speckled pattern 3rd line: comment HEP-2POS-1:40 4th line

comment

> > speckled pattern.

> >

> > Usually I can read lab reports. I did find that " speckled " may or

> > may not indicate anything. Does any of this make sense to you.

She

> > also did a Sed rate 51 with norm 0-30. Several years ago I had

seen

> > this doctor because at that time the sed rate was much higher.

After

> > being on prednisone for a few months it was still above normal.

So

> > her comment to this sed rate was that mine was always up.

> >

> > The lab report for the scl70 antibody said they would hold the

sample

> > for 30 days and suggested several other tests done on it. That

report

> > did include a rheumatoid factor that was 8 in a range of 1-20.

> > Nothing else that I could see on those test were in range. Since

she

> > didn't even know about that test naturally she didn't order the

other

> > tests.

> >

> > The Raynauds has only been bad for about 1 month. Before that it

was

> > not significant. I had meant to talk to the Rheu about that but

> > forgot. When I got home and remember that I called her office and

> > she said if I wanted to come back before the scheduled apt. to do

> > so. I have an apt. with my GP tomorrow and wanted to have

something

> > more definite when I see him but with my most recent information

find

> > I have been so overwhelmed I am not coming up with anything

> > specific.

> >

> > I find doctors seem to know so little even in their specific

> > category. But I think it interesting that the pulmonary doc knew

> > more about this than the rheumtologist does.

> >

> > I now have a list of autoimmune positive test. I am pretty well

> > knowledgeable about diabetes but just prior to these test I had

asked

> > my GP who is handling my diabetes for a specific test to determine

> > about the diabetes. He did not know about the test but did it.

It

> > came back positive just before I got these other reports. Between

> > all these test I have been spending a lot of time on this.

> >

> > It's hard to get a medical degree in a couple months! The advice

> > regarding Raynauds was " keep warm " . I don't know if it would be

of

> > any use to go back just to talk to her about the Raynauds. What

can

> > be done anyway?

> >

> > Sorry about such long post, but any information from any of you is

> > welcomed.

> >

> > Bvan (Betty)

>