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Biomarker for Diffuse Scleroderma skin has been discovered!


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Not even sure if I have Sclero


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#1 DawnBreakk

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Posted 03 April 2011 - 02:52 PM

Hi ya'll, ..

Here it is. I've been diagnosed with Lupus, Fibro, Peripheral Neuropathy, and RA... then Friday, my doctor runs in..rattles off my blood test results and says the following

Ok... you have Lupus because your tests show you levels are elevated in

your double strand DNA
Your ANA
Your thyroid is slightly elevated
your Sjogrens is elevated and
your scleroderma is elevated

*************************'
I was thrown about the Sjogrens... then she drops the scleroderma elevation in there as if we always talked about it and breezes right out of the room.

My question. IF, my "scleroderma level is elevated, does that mean I have scleroderma." I don't mean to sound like the proverbial.."What color is George Washington's white horse." But she was in and out in 10 minutes with a med student in tow and I was so stunned about the scleroderma comment that I was stunned. I left in tears. I didn't even know that was ever tested for with me. So, I immediately called back at the doctors to get a copy of the test results, and all I got was voice mail. I asked them to mail the results to my home so that I could have them for my records. At least I can try to figure out some of this stuff, but I don't know what this all means, much less any specific levels of what she is talking about. I'm scared. My neighbor where I used to live had the systemic scleroderma. I hate this autoimmune junk. Please provide your guidance.

#2 Jeannie McClelland

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Posted 03 April 2011 - 03:29 PM

Hi DawnBreakk,

Welcome to the Forums and welcome to the Autoimmune Not-a-Fan Club. :)

As you probably already know if you've been reading up on scleroderma, it's not diagnosed solely by a blood test but also by a combination of symptoms - the clinical presentation. You don't say what your symptoms are, but I'm assuming your doctor has taken those into account. You can have an elevated antibody level and not have the disease, but it sounds like enough other things are going on that it is possible you do have scleroderma. The one good thing is that many of the treatments for autoimmune diseases and their complications are the same no matter what the disease.

It's absolutely maddening when a doctor does what happened to you and completely unfair to the patient. If it were me, I'd schedule another appointment as soon as possible (and get pretty demanding that it be soon) and get some explanations. One of the things I have done is to say I do mind a student being present when I need the doctor's attention focused on me and my problems. You might try that too.

All of us here would recommend seeing a scleroderma expert if at all possible. No matter who you see, it is helpful to go prepared with a written list of questions and maybe take a friend or relative along to help ask the questions and remember the answers.

I hope you'll post often and let us get to know you. We're a friendly and experienced bunch and the main sclero.org site a wealth of information.
Jeannie McClelland
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#3 enjoytheride

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Posted 03 April 2011 - 05:31 PM

I agree so with Jeannie. Your doctor was unfair.
Do you have someone who can go with you next visit (which I agree means right away?) It doesn't have to be only a close relative. A good friend would do. Preferably someone who will say to the doctor "whoa!) So while you are getting distracted by all sort of emotions, this friend can ask the questions that you might forget.
If not, I have a sister who takes a tape recorder into every visit, says she has trouble remembering and then presses record. She never leaves with unanswered questions or unclear information. I wish I had her nerve............

Don't panic. Even if these tests were elevated now, that may change next time they are done. A diagnosis needs as much art from the doctor as labs. That's why doctors are not yet replaced by a computer- although I think you doctor might want to think further about the difference.

#4 Joelf

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Posted 04 April 2011 - 01:36 AM

Hi DawnBreakk,

Welcome to these friendly and informative forums!

Don't you just love a situation where someone drops a bombshell or two and then toddles off leaving you to pick up the pieces! :emoticon-dont-know: Poor you, no wonder you're feeling so worried; I'm so sorry that your doctor was so unhelpful.

However, as the other two members have said, Scleroderma is not just diagnosed by the blood tests only; there are many other factors to consider. I would also suggest that you insist upon having another appointment with your doctor, and certainly Enjoy and Jeannie's suggestion of taking another pair of ears with you is a really good one.

Jeannie has given you a list of Scleroderma experts which is quite important as many rheumatologists really don't understand the complexities of this bizarre disease.

To help you on your next doctor's appointment I've included a link to Sjogrens and also a page with information about Autoantibodies. It's very important to be as knowledgable about Scleroderma as you can be.....knowledge is power! ;)

Do please let us know how your next appointment goes and I'm looking forward to reading more of your posts and getting to know you.

Jo Frowde
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#5 Amanda Thorpe

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Posted 04 April 2011 - 04:14 PM

Hello DawnBreakk

Welcome to the forums! Being given a scleroderma diagnosis is usually a bit like being given an unexploded bomb to hold but it your case yours was more like a hit and run.

I do hope you are able to get some answers soon and in the meantime keep posting.

Take care.
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#6 Shelley Ensz

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Posted 05 April 2011 - 07:46 AM

Hello Dawn,

I agree with the others, you deserve further explanation regarding your blood tests, symptoms, and diagnoses. It sounds like your doctor was very rushed, as obviously there were many topics to cover.

You could use one appointment to cover only the blood results and what they mean, and nothing else. Likely you'll get assurances that blood work means nothing in the absence of specific symptoms of certain diseases, and that frequently different antibody profiles overlap when it comes to connective tissue diseases. Lupus is known as the "great imitator" for many good reasons! Nonetheless, you might have certain symptoms that leads your doctor to suspect more/further illness or a misdiagnosis (many of us were wrongly diagnosed with lupus at first), in which case it really deserves further discussion.

Here's a big group hug to tide you over in the meantime.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 Sweet

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Posted 05 April 2011 - 02:09 PM

Hi DawnBreak,

Welcome to the Sclero Forums. We're really glad to have you. I'm sorry you have so much going on right now, and what you just described sounds like you almost had a "drive by shooting" episode so to speak, with that results being hurled at you. Goodness, I'm sorry you didn't even have the chance to discuss what was stated. I think the others gave you great advice, about seeing a sclero expert. And GOOD FOR YOU, for asking for copies of your lab work.

Keep us posted. :flowers:
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#8 DawnBreakk

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Posted 05 April 2011 - 06:10 PM

Latest. I finally got the paperwork on my lab work, but after calling for 2 days, my rheumatologist's PA hasn't called back. I begged her on the voice mail to please call me back and let me know what's going on. I explained that I have been extremely upset and just need some answers on what is going on with me. Nothing, NADA!

So.. on the levels I did get to see that I do have scl70 levels elevated. Where negative is , 16 and positive is >20...mine is 47.. through in positive ANA quantitive and qualitive a liver that tells doctors that I drink alot when I cannot tollerate alcohol at all and a positive DNA's and you get the picture. So.. I have a little knowledge and it's a dangerous and scary thing.

I called my Primary Care doctor who referred me right back to my rheumatologist. Thanks for nuttin' doctors. If I make another rheumatologist appt, it's another $137.50 out of pocket. I have a $1200.00 deductable and a $3,000 top level before they cover everything..until next year when they do it again. Very frustrating. :temper-tantrum: Any info is welcome at this point.

#9 Jeannie McClelland

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Posted 05 April 2011 - 06:27 PM

Hi DawnBreakks,

I guess my question is how (and who by) are you being treated for the autoimmune issues at present? Was the lupus a new diagnosis the same day Dr. Speeding Through made the comment on the scleroderma levels? And when does this rheumatologist want to see you again (follow-up appointment)? As tough as it is to keep forking out $$$'s for the co-pays and deductibles, I suspect the only way you are going to get answers is to schedule another appointment. I would also demand a longer appointment than you have been getting and absolutely, positively, no-if-ands-or-buts take a written list of questions and a friend with you when do get your appointment.

As far as call-backs go, you might print out the Patient Bill of Rights and any code of conduct for the facility you were seen at, highlight the relevant sections and send it to the rheumatologist along with a letter of complaint AND the written list of questions. Sometimes polite just doesn't cut it.

Good luck and keep us posted,
Jeannie McClelland
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#10 Snowbird

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Posted 05 April 2011 - 06:38 PM

Hi DawnBreak

I agree, totally shameful is what that doctor did to you!

I also agree that you should ask for a specialist in scleroderma to rule in or out as the case may be. It's very important that you find a doctor that you can 'click' with and discuss things properly so that you understand what they are telling you, etc. If it were me, I'de ask for an appointment with someone else and I would not stop looking until I found that special doctor that I was happy with. Keep us posted.
Sending good wishes your way!

#11 DawnBreakk

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Posted 06 April 2011 - 05:33 PM

And the verdict is in. My doctors PA finally called! She said that since I am not showing symptoms of scleroderma, then it's not scleroderma. She said that even though I had positive Lupus and Sclero levels, since I am showing Lupus signs and not sclero, then that is how she decided the answer. The very first thing the PA said was, "Well, you've been looking on the internet haven't you and that's what scared you." I said, "No, .I lost my next door neighbor to the disease and THAT scared me. Once you didn't let me know what was going on THEN I looked on the internet and got with a support group." She said, rather sheepishly, "Oh, okay."

So I don't have it but said that Lupus can show false positive on scleroderma. So that's where it is for now.

Thank you for your help, understanding, listening ear and guidance. I now know where to guide anyone else who experiences this. Knowledge is power.

Love to ya'll,

Dawn :emoticons-group-hug:

#12 Shelley Ensz

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Posted 06 April 2011 - 07:37 PM

Hi Dawn,

What great news that is! For once, we get to do a really and truly Sclero Happy Dance. Everyone join in with me!

:emoticons-line-dance:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#13 Jeannie McClelland

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Posted 06 April 2011 - 09:51 PM

Hi Dawn,

:woohoo: Great news! To paraphrase a slogan from my younger days: Power to the Patients!
Jeannie McClelland
(Retired) ISN Director of Support Services
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#14 Joelf

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Posted 07 April 2011 - 01:24 AM

Hi Dawn,

Wonderful news!! :bravo:

I'm joining in the Sclero Happy Dance!!

:emoticons-line-dance:

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#15 kris52770

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Posted 07 April 2011 - 06:01 AM

Hi Dawn, That is terrific.. Congrats on your news. Joining the dance as well.
Christine :emoticons-line-dance:

#16 Chopper

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Posted 07 April 2011 - 09:09 AM

:emoticons-line-dance: I like to dance too!

That's very interesting too that Lupus can cause sclero bloodwork to show a false positive. I'm so glad you don't have both!
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#17 miocean

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Posted 07 April 2011 - 09:39 AM

Hi Dawn,

Joining the club with celebration of the great news! :emoticons-line-dance:

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#18 Snowbird

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Posted 07 April 2011 - 03:17 PM

Ok, I'm in and I'm dancing too, hurray hurray!! Sure hope I don't trip over anybody :lol: :emoticons-line-dance:
Sending good wishes your way!

#19 DawnBreakk

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Posted 08 April 2011 - 05:25 PM

:emoticons-line-dance: :emoticons-group-hug: thank you all for your support. I do appreciate everything.. and I mean E V E R Y T H I N G! In one week, I have survived a wild fire in my area, a tornado in my town and now scleroderma. Ok... I'm quitting while I'm ahead. :P See. I'm a HEAD.

Ya'll ROCK... Thanks again.. Best wishes to all

#20 susieq40

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Posted 09 April 2011 - 11:23 AM

:emoticons-line-dance: :woohoo: :woohoo: :woohoo:

So so glad you don't have Sclero! I hope you feel a little better with a definite diagnosis. Lupus isn't
anything to sneeze at though! I wish you well!!! HUGS HUGS HUGS!!

susieq40 :great: :great: :yes: