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New here, need advice

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#1 Chimama



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Posted 23 September 2010 - 12:58 PM

Hi, this is my first post.

I started having muscle pain 12 years ago, and saw a rheumatologist, who tested me. I came back with a positive ANA, positive rheumatoid factor and positive Scl-70. No clinical signs. So I was said to have fibromyalgia per trigger points.

Fast toward. I developed secondary Raynaud's in fingers toes 9 years ago. Still no other signs. I continue to have severe fibromyalgia pain and flares. The positive scl70 RF and ANA and c1Q. I just saw a doctor at a major medical center who said he's calling this UCTD. He said Raynaud's and fibromyalgia may be as bad as I get. All of my organs are fine.

My concerns are: their definition. Something going on in my body. My labs confirm this. Scl70 is usually tied to the more diffuse severe form of scleroderma. But long term secondary Raynaud's is usually tied to the limited type. Any input?

Also I know UCTD is a real diagnosis. But at what point can I rest and accept that I have that without the constant fear what it really means is that I just haven't developed issues yet?

How common is it to have secondary Raynaud's of 9+ years, and positive labs, especially Scl-70, yet no clinical signs?

My mom has rheumatoid arthritis, as do her sisters. Cousin has reactive arthritis. So my family history is full of rheumatic issues.

#2 Shelley Ensz

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Posted 24 September 2010 - 01:53 AM

Hi Chimama,

Welcome to Sclero Forums! I'm sorry its because of concerns about scleroderma, but very glad that you've found us.

It does happen sometimes for people to have positive Scl-70's and never go on to develop full-blown disease. They say that usually the disease establishes its own course early on, such as slow and lingering or fast and aggressive. It would seem that even if you do have incipient scleroderma, you'd most likely fall in the slow and lingering category. So this might be as bad as it ever gets for you. Or not. There is just no crystal ball, no way of knowing for sure.

So you're probably finding that the uncertainty is the thing that is hardest to live with. Many of us will face any disaster in good spirits, if we know exactly what that disaster is. But we fall apart in the face of uncertainty. That's where faith and philosophy come to the rescue. It took me a long time to grasp what some people in the forum quote frequently, "It is what it is." Now I draw a strange comfort from that slogan, as it seems to come to the rescue for me sometimes, when facing so many of life's uncertainties.
Warm Hugs,

Shelley Ensz
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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.

#3 jillatk


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Posted 24 September 2010 - 03:33 PM

Hi Chimama,
My doctor always says he can tell me what population studies say, but I am not a population, I am an individual, and if nothing else this disease is very individualistic. You may never develop any more symptoms or you may develop them all. But you could also get in your car tomorrow and have a horrible accident that is life altering. So live everyday for that day. Be the healthiest you can be at any given time and take every chance to embrace the joy that is life. The good news is that this disease is not necessarily a death sentence. Science and technology are moving rapidly and answers will come. You just have to stay healthy enough to benefit from the advances.


#4 janey


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Posted 24 September 2010 - 04:20 PM

Welcome to the Sclero forums! You have found a great place for information and support. This forum has members with various types of scleroderma with many different complication combinations. As has already been mentioned, scleroderma as well as other connective tissue diseases are different for each person. At this point, things have been very slow for you so let's just keep a positive mind and believe that things will stay on that course. Just stay in touch with your body, but don't dwell on it. Live life every day to its fullest, exercise, eat right, enjoy life and laugh, laugh, laugh.
Janey Willis
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#5 SuzanneL



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Posted 27 September 2010 - 07:31 AM

Thanks so much for posting.

I am SCL-70 positive - but have no symptoms at all of scleroderma - no skin thickening, no Raynaud's, no swelling, nothing. I went to a rheumatologist because my mother has thyroid disease which was diagnosed in her 40s. I wanted a baseline for thyroid and I was also going to mention to him some random and fleeting (and not all that bothersome) aches and pains I had been having fort the last 6-8 months. He looked at me - said I was the picture of health - nothing autoimmune happening here but let's run some blood for the baseline... he even said to me "it will come back completely normal"...well boom. SCL-70 positive in June. Retested in August and positive again - although at a much lower number.

He had me in to look at me again - nothing clinically that says sclero - he did nailfold capillary exam (normal) and looked at and pinched all my skin. He sent me for an echocardiogram which was normal, and I had a lung CT scan in June - just 2 weeks before the blood results - for something totally different. Normal.

So, I have researched and gone crazy on the internet trying to find all I can about about what this all means, what it could be - and it is very confusing.

I, too, hope since I already have the antibody, but no symptoms for nearly 4 months since finding out I was positive, that I will have a mild form if I have one at all. My rheumatologist feels my chances of getting sclero are around 10% given all this. He feels if I get it, it would be mild. He says he has many patients like me who he follows, and he treats a lot of sclero , too.

I am headed to Johns Hopkins in 3 weeks- hope I can get more info, and share at that time.

Can I ask - what are your Scl-70 positive numbers ?

#6 enjoytheride


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Posted 27 September 2010 - 03:43 PM

It can be nerve racking to live with such unknowns- but at least for me, it has gone from an complusion to read everything I can and figure out every pain and ache to actually getting comfortable with each change as it happens. I have gone through the trek to the doctors enough times to learn that, so far anyway, I can cope with what has happened.
Not to say that I don't have moments of anxiety but I have also learned that a change is not neccesarily a five alarm fire- most are more like "I need to ask the doctor the next time I see him."
The greatest shock to me was that recently I have truly accepted I have a "disease" and it's not all a big mistake but that I did not get depressed at the thought. However unfortunate, it is part of my normal life now but only a part. I still love to walk in the woods, hate ticks, get up and feed my animals, revel in a beautiful sunny day, go to community stuff, etc.
It will take time for you to mentally adjust to the possiblity- then hopefully you can tuck it far back in your mind.
Personally I may be senile but I can't wait for the other shoe to drop too long- I forget the other shoe is there. :)