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Elizabeth28

Positive ANA, SCL-70 but no symptoms - are other people in the same situation?

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Hi WRC 1000,

 

Welcome to these Forums!

 

I'm very pleased to hear that (so far) you've escaped the unpleasant symptoms of scleroderma, despite having positive blood tests.

 

This does emphasise the advice we always give, regarding the importance of blood tests in the diagnostic process.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi! I am also positive ANA 1:180 homogenous and positive for Hashimoto’s (which I definitely have) and scl-70 for which I have no symptoms .. yet? 

It is a purgatory of uncertainty to test positive and spend a fortune getting echo/PFT and Rheumatologist at UCLA. 

 

My doctor seems to think this this is a lab error or cross contamination but says that there are some people who will test positive and never develop scleroderma.

 

How many out there are positive but no symptoms?

Brenda

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Hi Brenda,

 

Welcome to Sclero Forums and thank you for contributing your experience so far with SCL-70 but no symptoms.

 

As it happens, autoimmune thyroid disease is sometimes a sort of gateway to other systemic autoimmune conditions. See Exploring Systemic Autoimmunity in Thyroid Disease Subjects, 2018 Journal of Immunology Research.  Also see Autoimmune Thyroid Disease on our main site. 

 

On the positive side, if you ever do develop other symptoms, it is likelier that they would take them seriously many years sooner than for others, and thus perhaps sort of nip things in the bud. Make sure your treatment of Hashimoto's is optimal, and do everything in your power to keep stress under control, as it is also hard on the immune system.  I'm sure in many ways it's a disadvantage to know about antibodies before any relevant symptoms appear, but the flip side of the coin is having abundant symptoms but no relevant antibodies. 

 

It's a catch-22 -- it's not ideal to be stuck on either side of the coin. But there are very few of us who managed to get classic symptoms right along with perfect antibodies, at precisely the right time...and who really wants that, either? It's all objectionable, when it comes right down to it. 

 

It's like, what do you want? Worry but with nothing to show for it?  Confirmed worries? Or continued worries with symptoms but no antibodies? "None of the above" is the correct answer.  And you could argue that it is harder in some respects to have a potential cause for concern but nothing to show for it, which could be crazy-making if you let it.  So keep on keeping your head on your shoulders. You'll find both comfort and concern from stories of people who have antibodies and so far nothing, or had antibodies and then got sick later. 

 

:hug-group:


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.

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Hi, everyone that has just joined the Forums.

 

To tell a few of you what I have gone through with my disease. It started in Canada after unloading a load of rails and throwing straps over the hay to secure the load. I was in the right place at the wrong time and I fractured my skull, broke my nose and neck. The doctors think that might have caused the beginning of the scleroderma and there are a lot of theories that cause scleroderma.

 

The first test was on my legs, when that was done the doctors took 6 tubes of blood. The labs here got a partial and the blood was then sent to the Mayo Clinic. My doctor called me to come to the clinic and she told me I had scleroderma. At that point she set me up with a rheumatologist and when I walked into his office he said I definitely had scleroderma.

 

I have given up most of my driving in town only. I have to see my rheumatologist on Wednesday; I hate going to see him as it's 2 hours there and 2 hours home. My son has moved in with me to help; he is doing a great job. My last thing I have to say is I think I am glowing in the dark and I wish someone would answer that awful ringing in my ears.

 

May each of you be blessed.

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Hi Quiltfairy,

 

You've certainly had more than your fair share of problems with scleroderma and I think that you're incredibly brave. You have a positive attitude which is extremely refreshing and makes me feel very humble when I hear how you overcome all the difficulties you face.

 

Thank you for sharing your story with our members and hopefully they will be able to exhibit the same sort of courage, which you are showing.

 

My best wishes to you,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi everyone. I am new here (and newly diagnosed) but wanted to share a little about myself.

 

A year ago I had lumps on my neck, which after biopsy were thought to be a form of cutaneous lupus. My general practitioner ran a series of blood tests and my ANA was 1:640 anti-centromere. 

 

I went to a rheumatologist 2 weeks later who reran the blood work with a specialty lab - ANA was 1:2560. At this point I had no clinical symptoms and she told me it is possible I may never develop any. I had a baseline Echo and continued life as normal.

 

A few weeks ago my life was turned upside-down. 

 

I began experiencing excruciating pain in my finger tips on my left hand. It felt like they'd been slammed in a car door and I could not use my hand at all. Went to general practitioner and then ER after 2 of them turned purple and would not change back to red. Both thought possibly Raynaud's but it was not a classic presentation.

 

Got in with rheumatologist again who confirmed Raynaud's and explained that with scleroderma the presentation is worse - not a typical turn white and back to normal in 15 min. I had excruciating pain with no relief for about 2 weeks. She put me on norvask and sildenafil (viagra) 2x day and baby aspirin and the improvement was night and day.

 

I saw her again this week and will see her again in a month for a baseline chest xray. Then it will be a cadence of every 3 months. 

 

She says I may never develop other symptoms but chances are I will in a year or two. 

 

Long story short - I'm terrified? Sad? Angry? Happy to have a good rheumatologist? Grateful for a supporting family? Grateful for a job that let's me work from home when needed?

 

Very mixed emotions. Glad to find this group.

 

Gina

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Hi Gina,

 

Welcome to these forums!

 

I'm sorry to hear that you've been experiencing worrying symptoms and have a possible diagnosis of scleroderma. One of the idiosyncrasies of scleroderma is that it affects everyone differently, which is why we recommend that our members consult a listed scleroderma expert. Raynaud's is one of the most common clinical signs of the disease, but of course it's nigh on impossible to predict how it will progress. It could be that despite your rheumatologist's fears, you may never suffer with any other symptoms than the ones you already have (but of course it's equally possible that you might develop internal involvement or other problems.) 

 

I would also say that a positive attitude does go a long way to helping you cope with this rather bizarre and complex disease.

 

Kind regards,

 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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