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#1 JEF

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Posted 15 January 2010 - 02:02 PM

Hi Everyone,

I'm here because I've gotten lab reports that say I have a high ANA, and am positive for SCL-70 antibodies. I don't have symptoms, but of course, every little ache or pain is causing me to worry. I found this thread http://www.sclero.or...same-situation/ on your boards. I'm one of the folks who is in the same boat. I want to thank them for starting the thread and for the information in it.

Thank you so much.

JEF

#2 Jeannie McClelland

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Posted 15 January 2010 - 04:43 PM

Hi JEF,

Welcome to the Forum. I'm glad you found the thread you mentioned, since it highlights that a positive ANA and Scl-70 are far from being a guarantee that you will ever develop any symptoms whatsoever.

Positive antibodies, however, can be helpful within an overall clinical picture by pointing a direction for further investigation. I am sure you'll have read that a diagnosis of scleroderma is dependent on having a number of symptoms (usually validated by testing) that meet the criteria set by the American College of Rheumatology.

You don't say why you were tested for these antibodies, but hopefully it will all have been a false alarm. Those are very useful for getting our heart rate up! :D

Best wishes for continued good health,
Jeannie McClelland
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#3 JEF

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Posted 16 January 2010 - 05:08 PM

Hi there,

I was tested because my father recently died and one of his doctors thought he might have had scleroderma. He had pulmonary fibrosis and kidney failure and things went downhill really quickly. He was 87 and got very sick and passed away within 6 months. Anyway, I am currently in very good health, but I had a previous experience with a very mild episode of Transverse Myelitis -I'm fine now with no lasting damage except slightly tingly hands (been that way with no change for 12+ years).

Given my father and given my history of TM (autoimmune issue), my doctor thought we should test my ANA. She expected it to be normal. When it wasn't, she had to send me to the rheumatologist. The rheumatologist also thought I was fine, but she had to run the follow-up blood work because of my high ANA. She was surprised that my Scl-70 was high. She said we'd need to follow up in 6 months to a year. I feel fine, other than very worried. I worry about every little thing though. Some of my worries: I am tired... is this normal tired or scleroderma tired? When I had TM, I had PURE exhaustion and I'm not that tired now, so I tell myself it is okay. I sometimes feel like my throat is tight... is this scleroderma or just normal? Once a month, I'll wake up and have heartburn... is this normal? My ears are stuffy, is this bad? My eyes are getting increasingly bloodshot it seems (blood vessels)... is this normal, due to dry winter air or scleroderma?

Anyway, I'm trying to put the high numbers behind me and not think about them, but it's been hard to not wonder. I don't know whether I'm glad I have the information about the Scl-70, you know, in case something happens I'll know what it is, or if having the information is just too much stress for no good reason.

Thanks for having the forums.

#4 Jeannie McClelland

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Posted 17 January 2010 - 06:00 AM

Hi JEF,

You've highlighted the ethical dilemma doctors face every day: what to tell the patient. Scleroderma is an exceedingly rare disease. A person has only a 0.002% chance of getting it. Anti-body tests are not the 'gold standard' of a diagnosis, so in the absence of any other symptoms, should a doctor tell the patient of the slim possibility that he/she may some day develop some form of the disease? Especially when it comes in so many forms, from very mild (inconvenience and discomfort) to extremely serious (potentially fatal) - should a doctor tell the patient or not?

I'm so sorry you lost your father and been given this worry on top of it. I'm of the "I want to know" school, but over the years (I'll be 63 in a few months) and given the experiences of an interesting life, I've worked very hard to develop good coping skills. You're in that limbo of endless possible scenarios and stuck in the waiting game, compounded by coming so soon after the illness and death of your father (never easy to deal with). So the thing you really need to deal with now is the anxiety. Here's the link to our section on Emotional Adjustment. Look on developing coping skills as an investment for your future good health, just the same as a healthy diet and appropriate exercise are worthwhile investments.

And that brings me to another of my favorite soapboxes: doing everything you possibly can to maintain good health. Boy, does that ever pay off!

Best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#5 JEF

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Posted 17 January 2010 - 10:41 AM

Hi Jeannie,

Thanks for message... I guess, I hadn't realized that my worry about the Scl-70 results was jumbled up emotions related to the loss of my father. (Um, obvious to everyone else, probably, but it wasn't to me... Thanks for helping me see that.) It's really important that I separate those issues, me thinks.

As far as healthy lifestyle, for the last 10 years, I've been really health in terms of diet and exercise, but probably less so in terms of stress... That's the one area I do need to work on.... I just have a Type A personality and lots of guilt if I'm not doing EVERYTHING for EVERYONE else. I need to work on that. It's so hard to put myself and my needs into a priority spot.

Thanks for your thoughts,

JEF

#6 Amanda Thorpe

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Posted 18 January 2010 - 12:23 PM

Hello Jef

Welcome to the forum although I hope that you never truely become...one of us! :lol:

Take care.
Amanda Thorpe
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#7 JEF

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Posted 19 January 2010 - 01:47 PM

Thanks Amanda! :-)

This is a really great site. I've learned so much browsing it. Kudos to you and the rest of the team.

#8 Sweet

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Posted 21 January 2010 - 10:11 AM

Hey Jef,

Welcome to the forums! I'm really sorry to hear about your diagnosis. Did your doctor start you on any treatments? There are medication out there such as plaquenil that can slow the progression, and in some cases halt the progression completely. I was thinking your red dry eyes could be a symptom of sjogrens as well. Keeping your eyes lubricated will help.
Warm and gentle hugs,

Pamela
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