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Scleroderma Blood Tests and Diagnosis?


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#1 grace

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Posted 09 August 2011 - 02:41 AM

Hi,

I am wondering whether scleroderma blood work, always shows only an elevated ana-anti-dsna, and the rest are negative? Mine will go from 21 down to 10.I am having a lot of problems with doctors and what they tell me. I seem to have a lot of urinary tract issues. Is this common? I have pulmonary hypertension by ECHO for the last 6 years. My doctor said a heart catheter was OK last year, but now I have a moderate pericardial effusion, which was small till recently. Do any other of you have conflicting diagnosis? I have a lot of pain in my hands and elbows. Can you have osteoarthritis with scleroderma?

Thanks,
Joyce

#2 Amanda Thorpe

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Posted 09 August 2011 - 06:03 AM

Hello Grace

Welcome to the forums! Have a look at our resources about tests for scleroderma it includes a link to lab tests online that you may find helpful. We also have information about pulmonary hypertension and cardiac involvement.

Scleroderma can overlap with other diseases and is a rare form of arthritis itself and the road to diagnosis can be a long and difficult one.

Take care and keep posting.
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#3 Joelf

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Posted 09 August 2011 - 06:47 AM

Hi Joyce,

Welcome to these forums!

I don't, thankfully, have the heart involvement you've described but I can empathise with you over the pain in your hands and joints. I've included a link here for you on Hand and Joint involvement which I hope will be helpful to you.

Quite a few of our members have had conflicting diagnoses before finally arriving at Scleroderma; part of the problem is that this complex disease presents itself in so many different forms and it appears that no two people seem to have the same symptoms, although they may have lots of symptoms in common. As Amanda has advised, this makes getting a concrete diagnosis very difficult.

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#4 Jeannie McClelland

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Posted 09 August 2011 - 08:10 AM

Hi Joyce,

Welcome to the Forums!

Conflicting opinions and even diagnoses are very common in scleroderma and it's various symptoms. That's why most of us recommend seeing a scleroderma expert if we can. I have to warn you, though, often the scleroderma experts will have one particular organ system they are interested in (skin, heart, lungs, and so on), and if you are concerned with something else, say an endocrine problem of some kind, even though it is often related to scleroderma, you may find yourself back in the land of conflicting opinions.:blink:

You pose one question I can answer from personal experience: yes, you absolutely can have osteoarthritis and scleroderma together.

Keep posting and let us get to know you, OK?

Best wishes and a warm hug,
Jeannie McClelland
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#5 marsha

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Posted 23 September 2011 - 12:29 PM

Joyce Welcome!!

I too agree with Jeannie, it is advisable if at all possible to seek out a Sclero specialist.

Good luck with your journey and always know that this is a great and wonderful place to bounce Ideas/problems off of the people here are above top notch!!!

Take Care and again, Welcome,

Marsha

#6 judyt

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Posted 24 September 2011 - 10:29 PM

Hello Joyce,

The question of Anti Nuclear Antibody results seems to be the topic of the day today. If you have a Positive result with a centromere pattern, then it would seem that you have a positive result for Limited Scleroderma. There will be a titre ratio as well, in my case the first one was 1:1280. In subsequent years it has dropped to 1:640.

Anti dsDNA with a unit level over 60 is getting towards being positive for Lupus.

Then there are Extractable Nuclear Antigens which identify a number of different things and some, all or none of these could be positive.

Then again, just to confuse the issue I live in New Zealand and I suspect that some of the scales used are different from those used in the US and UK.

And to further confuse the issue I was told a couple of years ago that I had Pulmonary Hypertension and virtually written off by the person who passed the news on to me!! However, I now find that I had Rheumatic Heart disease and Mitral Stenosis which is treatable and nothing at all to do with my Scleroderma. My Mitral valve has been repaired as well as it can be and I am no longer in danger of developing any more serious heart problems any time soon.

So I would stay try to deal with one thing at a time - maybe your osteoarthritis will respond to over-the-counter treatments which are available these days. I know my knee is doing better than I expected it to when I first discovered that was the problem there.

Keep posting and reading all the information which is available to try to help you help yourself.

Best wishes from NZ

Judy T

#7 czecher

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Posted 25 September 2011 - 08:04 AM

I am a former lab technologist with some experience with doing ANA, ENA, anti-centromere antibody detection from back in the 1980's.

Methodology and interpretation have evolved immensely over the years. For example, in the 1980's,rat liver sections were used to detect ANA's, now human epithelial cell lines are used more often. So,you can expect different patterns depending on which substrate you use. To add more confusion, different methodologies can vary between labs, so that's likely the reason for the different results. The more important information is finding what the normal value is for the lab where your test is being done.

As for the numerical portion of your result, it's the dilution of your serum. A value of 1/100 means that a positive result can be obtained with your serum up to a 1/100 dilution. Some labs will only dilute your serum to a certain point, at which time they will send out a result of 'greater than 1/1000', meaning that it's still positive staining at 1/1000, and the result is abnormal enough that there's no need for further dilution. Hope that clears things up for some of you.

#8 Cayla Butcher

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Posted 29 September 2011 - 04:59 AM

Hi,

My mum was diagnosed with scleroderma when she was about 30, she is now 50, since she has suffered swelling and red spots on her hands, arms, face, Raynaud's and severe leg ulcers -- so severe that she had her left leg amputated about a year ago, and just recently while in hospital she developed a life threatening infection in this wound.

When she was first diagnosed with scleroderma she was told it was limited sleroderma, but since this infection her doctors are saying she has both. She has had trouble with her kidneys, heart and lungs, but before she got the infection her breathing was never that bad but now they are saying she has pulmonary hypertension and will be on oxygen forever. They have also said that she has roughly 12-24 months, and that is if infection stays away.

She has never seen a scleroderma specialist, only doctor after doctor. Is there anything else we should or could be doing?? Does anyone know survival stats, or anything?

#9 Joelf

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Posted 29 September 2011 - 02:32 PM

Hi Cayla,

Welcome to these forums!

I'm so sorry to hear about the horrible problems your mother is facing. You must be feeling very worried and anxious about her and I do wish I could give you a little more reassurance. Unfortunately because Scleroderma is such a rare and complex disease, many run-of-the-mill doctors and rheumatologists just do not have the expertise to deal with it. We do recommend that if possible you consult a Scleroderma specialist who should be more able to advise your mother about the best way to treat her symptoms and the course of her illness.

I've included a link to Systemic Sclerosis: Prognosis and Mortality which I hope will give you some more information.

Do please keep posting and let us know how your mother is faring.

:emoticons-group-hug:

Kind regards,

Jo Frowde
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#10 Amanda Thorpe

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Posted 29 September 2011 - 02:54 PM

Hello Cayla

Welcome to the forums and I am sorry your mother is so ill. Like Jo I strongly recommend your mother see a scleroderma specialist even if it means a bit of travelling to get there.

Life expectancy depends on many things and as a person with scleroderma myself I would want it to be a scleroderma expert that determined my life expectancy, no one else.

I have foot ulcers and now have the beginnings of more ulcers just above the ankles. I have a friend with scleroderma who had foot and leg ulcers for 30 years and she bursts into tears just taling about the pain she has had as a result. I am so sorry your mother has had to endure these over the years with such devestating consequesnces..

The one thing your mother has going for her in all of this is you. Please take care and keep posting.
Amanda Thorpe
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#11 Shelley Ensz

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Posted 29 September 2011 - 03:06 PM

Hi Cayla,

I am very sorry that your mother is so ill, and I send my best wishes to you and her and your whole family. She is very fortunate to have you researching and advocating on her behalf. Please keep at it because family involvement can make a huge difference and be a tremendous and much needed support. All too often we find family members that stick their head in the sand, trying to pretend that scleroderma doesn't exist, isn't serious, or doesn't require any of their time and attention. It is great to see your positive example of how to face it by finding the facts and dealing with them, straight up.

I would very strongly urge that your mother see a listed scleroderma expert. There are treatments available for pulmonary hypertension now, and the right kind might even help with healing her leg ulcer.

The point is, most doctors have never treated scleroderma or only a few cases. Scleroderma is an unusual illness plus it occurs differently in everyone. Expert care could be priceless at setting your mind at ease while also making sure your mother is getting the very best care possible.

As for how long she could live, about 40 years ago I was given 2 years left to live, max, at the rate I was going and that was provided I lived through that hospitalization (although at that time they labeled it "collagen vascular disease" which meant absolutely nothing to me because the internet wasn't born yet.)

Clearly, things turned the corner for me health-wise and even though it hasn't exactly been a walk in the park, I am still here. Even the finest medical predictions can be dead wrong. Plus, scleroderma can slow down, stop completely or even reverse itself any time in the course of the disease -- and that is all the more likely with modern treatments for symptoms and expert care. We have members here who have now had scleroderma and pulmonary hypertension for years, and have even had it stabilize and improve with expert guidance and treatment.

That's not to say things will be easy, or improvement will be guaranteed for your mother. It does not detract from any of the seriousness of what she is facing. It is only to say that there is some hope, for at least a slightly improved outcome, and that you will improve her odds for a bit more favorable outcome by consulting a "real" scleroderma expert at your soonest opportunity, if that is at all possible.

Also see our section on Pulmonary Hypertension for treatment information and the latest research.

Meanwhile, here is a warm hug from me. Please pass it on to your mother for me, okay?

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#12 judyt

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Posted 30 September 2011 - 03:21 AM

Hello Cayla,
My best wishes to you and your family at this worrying time, but as others have said, don't give up the fight to get a better outcome for your Mom.

I just want to say that I am one of those who has had this disease for more than 40 years and I intend to carry on for many more yet.

Two years ago I was told by a doctor, who should have known better, that I had Pulmonary Hypertension and that it was not treatable and I should just go home an accept my fate. That was so untrue that it is laughable now but very worrying at the time. In my case the PH was due to my having had Rheumatic Fever as a child and nothing at all to do with my Scleroderma.

I too get leg ulcers but have been managing to keep them under control lately - due I think to good advice and diligent doctors.

Keep in touch with people on this site, ask as many questions as you want to, there is almost always somebody who has experienced every little thing that can some up.

Warm hugs and best wishes

Judy T

#13 Cayla Butcher

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Posted 30 September 2011 - 03:26 PM

Thank you so much everyone.

I am in the Geelong area. I don't mind traveling too far, any suggested sclero experts?

Thanks again, will keep updating!

#14 judyt

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Posted 30 September 2011 - 10:55 PM

Hi Cayla,
I began to wonder if you are in Australia. I think that what got me started there is all the advice about getting your Mum to a Sclero Expert and of course there are not so many of them downunder. Here in NZ we have none that I know about. Thankfully there are some in Aus. You should post a message to Robyn Sim on the Australian Forum, if she hasn't already replied to you.

I know there is a centre of excellence in Adelaide and I am more or less sure that Robyn has talked about good doctors in Melbourne.

You could send a personal message to Robyn asking for help - that is if you can figure out the new system on the forum. It used to be easy but lately I have found it quite difficult. Or just post a message on the forum and she will get back to you.

Warm hugs and best wishes from downunder in NZ

Judy T

#15 Cayla Butcher

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Posted 01 October 2011 - 05:22 PM

Thanks Judy,

I will be sure to message Robyn, thanks so much :)

#16 Robyn Sims

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Posted 18 October 2011 - 01:52 AM

Hi Cayla,

I have been wandering around my computer and came across some messages. I very rarely check it, but this has made me so embarrassed. I did not join in with your post Cayla.

Those with scleroderma in Geelong unfortunately need to travel to Melbourne, and it sounds as though Mum would not be happy about this. I cannot recommend any doctors on this forum either. However there are Scleroderma Clincs, both with specialist nurses, at St. Vincent's and Monash Medical Centre.

I sincerely apologise for the delay in posting.

If you wish to contact Scleroderma Victoria through their website I am sure they will also help. They do have a Support Group in Geelong.

#17 Shelley Ensz

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Posted 21 October 2011 - 06:42 PM

Hi Cayla,

Will you all be able to travel to Melbourne for your mum's care?
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.