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#1 jlang

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Posted 12 June 2013 - 05:30 PM

I have had 2 positive SCL-70 tests in the past month.  All other ANA and antibodies including RNA Poly III is negative.  I have some mild pulmonary hypertension not verified by a right heart cath, but no real symptoms of PAH disease itself.  I also have had a CT scan on my lungs and show no lung disease.  The nailbed test was negative as well.

I don't have Raynaud's, or any outward signs of scleroderma.

 

What I do have is slow motility, GI issues with chronic constipation due to the slow motility I assume, very achy and painful legs with muscle twitching when I sit still finally after being on my legs for a while.  I have some spinal stenosis and bulging discs, but the doctors say for a 55 year old woman I am going to have some back issues but the spine is not causing the amount of pain in my legs I am having.

 

I guess I just am not sure how to proceed.  The doctor's approach is to sit and wait for changes that may or may not develop.  I'm not crazy about waiting for the shoe to drop.

Does anyone else have positive SCL-70 without any other positive antibodies?  Should I go to Boston and see a Scleroderma specialist?  I don't want to be laughed out of the doctors appointment, but I also don't want to wait with this hanging over my head.



#2 Shelley Ensz

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Posted 13 June 2013 - 08:12 AM

Hi Jlang,

 

Welcome to Sclero Forums!  I'm sorry that you have concerns about possible scleroderma. I suppose you could call the Boston center and ask them whether or not it would be appropriate for you to make an appointment with them.  For example, you may want to ask about having a baseline evaluation done so that if anything changes, it could be caught early on.

 

Would you mind clarifying the pulmonary hypertension situation for us?  Does it mean that it was diagnosed via some test, but that you haven't had a heart catheterization yet, or does it mean that you had a heart cath but it did not show PH?

 

Please keep in mind that the average wait for scleroderma diagnosis is 6 years for women (3 for men). The usual treatment plan is treatment of symptoms as they arise. So at present, it's probably not like you are missing out on some tremendous medical breakthrough that will stomp out the disease.  See our section on Difficult Diagnosis. However, going to a scleroderma center might speed things up a little bit, at least if it is possible to make an early diagnosis, which even with a positive SCL-70 it is not an absolute shoe-in; it still requires the presence of certain symptoms in order to make the diagnosis.

 

More importantly, before you make any of those arrangements, you'd want to see if you can wrap up any insurance matters, such as having life, medical, and disability insurance taken care of, because it may be impossible to get those sort of things after a diagnosis. (But, with a diagnosis of PH in your medical record, it might already be too late, unless you had a heart cath that overturned a suspicion of PH.)

 

Also keep in mind that a good share of lab results are inaccurate. So, for example, it's possible that your SCL-70 might evaporate upon testing at the scleroderma center and that you might be out of the woods of PH with a proper heart cath. What I'm trying to say is that you can try to balance your health concerns with a fair amount of hope so that you remain on an even keel until you get more answers. This is important as you might be in a situation where it may take a very long time to get any definite answers, and the less the stress of it all wears on you in the meantime, the better.

 

We've heard from a fair number of people who have positive antibodies but have not yet developed any symptoms or any symptoms serious enough to garner diagnosis, in years. So it's not like the antibodies guarantee that you will have a quick or easy diagnosis, although my general impression is that it is likely that your concern will be taken much more seriously than a person with the exact same symptoms but without the positive antibodies.

 

:emoticons-group-hug:


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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 Joelf

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Posted 14 June 2013 - 01:54 PM

Hi Jlang,

 

Welcome to these forums!

 

I'm sorry to hear that you've had worrying blood tests and are concerned about the possibility of having Scleroderma. Unfortunately as Shelley has advised, it is notoriously difficult to diagnose, not least because it affects all sufferers differently. Many of our members are in the same boat and awaiting a diagnosis can be incredibly frustrating, as often the symptoms of Scleroderma can mimic other illnesses. Also, although positive blood tests can be a sign of Scleroderma, it's also quite possible to have positive antibodies and yet never go on to develop the full blown disease and vice versa, as many of our members can testify.

 

I can understand how worried and concerned you're feeling and perhaps it would be advantageous to contact the Boston centre as Shelley has suggested, if only to set the ball rolling, so to speak.

 

Kind regards,


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#4 jlang

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Posted 18 June 2013 - 03:53 PM

The PH is only based on the echos I have had, not a right heart cath confirmation.   I have had mild PH readings for 10 years.  It started in 2003 with a reading of 43-48, 2006 was the same, 2009 was 37 and then this year was 50-55, a repeat was done a few weeks later and it was 45.

 

I am going to have a colonoscopy and endoscopy on Monday to see if there is any sign of sclero there.   



#5 Shelley Ensz

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Posted 20 June 2013 - 06:26 PM

Hi Jlang,

 

How did your tests go this week? 

 

:emoticons-group-hug:


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.

#6 jlang

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Posted 29 June 2013 - 07:37 PM

I had the colonoscopy and endoscopy last Monday.  The doctor left before I was awake but no polyps and the colon looked good so that bought me 5 years for a repeat this time.  Not sure what happened with the endoscopy other than she did a few biopsies of the esophagus and stomach in a few different places.  She didn't leave a note about any signs of scleroderma so no news is good news.  Prep was horrible.  Miralax and Gatorade does not taste so good coming back up.

 

With my slow motility I should have spaced out the doses.  About an hour into the prep I got violently ill.  Won't do that again! 

I am just about done with testing I think and everything is normal other than the SCL-70 which came back positive twice. 

 

I'm not sure if I should go to a specialist in Scleroderma or wait to see if any changes occur.  Like I said the only issues I have are GI and the mild PH which has not changed in 10 years. 



#7 judyt

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Posted 29 June 2013 - 08:07 PM

That news is certainly encouraging, a break of 5 years is certainly a nice response.   Well, I think so anyway.   I have had what seems like endless Colonoscopies for the past 25 or so years and I still dread them.

 

One thing I have discovered for myself is to use a low volume laxative.   I don't know the one you mentioned and I know that the more fluid the better BUT for somebody with a small stomach (from previous surgery) and slow motility, 4litres of foul tasting stuff is just over the top.   It comes straight back up for me.

 

I ask for a small volume one which tastes worse probably but that is only brief because it goes down quick then I follow it up with  lots of small amounts of a soft drink which I like.   I use GingerAle (not Ginger Beer) but I have found that it is not necessarily available everywhere.   It is almost a NZ oddity I think.   Ginger is good to settle nausea and so I find it has a double benefit.   Drink plenty of that in between and life is much more bearable.

 

I have had PH but it was caused by Rheumatic Fever in childhood so after the initial shock of thinking it was PAH from the Sclero I was greatly relieved to have a minor valve repair and the PH went away.    Probably time I had another Echo just to check but it is 3 years ago now so I am hopeful nothing else has popped up.

 

Best wishes

Judyt



#8 Amanda Thorpe

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Posted 30 June 2013 - 08:11 AM

Hello Jlang

 

If you have a look at our pulmonary hypertension video you'll see that ECHO can suggest PH but that it can only be diagnosed with right heart catheterisation. If you have been told you have PH without having a right heart catheterisation you might want to ask for one so that you can be certain whether you have PH or not.

 

Seeing a scleroderma expert would put your mind at rest, even if they said you did not have scleroderma at least you would know for sure! If you look at the symptoms of systemic scleroderma video it lists both gastrointestinal issues and PH as symptoms of scleroderma and if you have 2 or more symptoms you should see your doctor.

 

Take care and keep posting.

 

 

 

 

 

 

 

*A word of warning about ginger, it can trigger heartburn!


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#9 jlang

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Posted 01 July 2013 - 04:01 PM

No signs of sclero with the endoscopy or colonoscopy which I am very thankful for, but still not sure what to do.  I know it is what it is, but I hate having this cloud over my head waiting for the sky to fall on me.  



#10 Shelley Ensz

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Posted 01 July 2013 - 06:34 PM

Hi Jlang,

 

I'm glad your endoscopy and colonoscopy results were good, however I do understand as well the consternation in wanting some answers.

 

Try to remember that even when people have scleroderma diagnosed, it is easy to stay with the thinking that the sky is going to fall "any day now", whereas many, perhaps even most, of us keep on with things pretty much the same for years, and years, even decades in some cases. One of my friends had systemic for about 50 years before she passed away from it.

 

Roughly 50% of people with symptoms of connective tissue disease never go on to develop a full-blown, diagnosable illness. Ever!  Even with diagnosed systemic sclerosis, people often go into remission naturally and sometimes their symptoms even clear up, without any treatment at all.  So you might be dreading something that will never come to pass.  Progression is not inevitable.  In fact, it might be just as likely that your health remains the same, or even improves.

 

What would you do differently, if you knew, right now, that you were one of those 50% who never got any worse than you are right this moment?  I'm sure you wouldn't skip out on your annual screenings, just to be on the safe side.  But would you be taking up a new hobby, calling a friend for lunch, adopting a pet, volunteering some place, taking a night class?

 

I'm sure you'd be the first to tell me that worrying about things won't make them come to pass, nor will it help to avoid them, either.  And when we learn how to handle worry (by focusing more effort on things like fun and hobbies), it also helps us down the road when we are inevitably faced with even bigger challenges.

 

Oh dear. I probably didn't help at all, did I?  But all I know is that worrying about getting diagnosed is no different than worrying about something after it is finally diagnosed, and when you figure then our worst fears have even been confirmed so if we are inclined to worry, we can have a real field day then, and it's a lie when we tell ourselves, "I'll feel better when I'm finally diagnosed!"

 

No. We will not. Most of us wish we'd used our pre-diagnosis time a lot more productively, however we didn't have the benefit of someone else telling us that worry is worry is worry, no matter what the outward circumstances, no matter whether it's "justified" or not, worry is worry is worry.

 

I've lost count of the times that I have learned the hard way that worry is always optional.  Even for people with scleroderma! Even for people with SCL-70 antibodies and sincere concern about scleroderma.  An article I like on this subject is from Psychology Today, Give up Worry by Recognizing it as a Bad Habit. 

 

One of my favorite lines in there is, "The key is to accept that every thought that crosses through your mind is not necessarily true."

 

What's your favorite line in that article?  Did you find any of it helpful?

 

Please remember, you can get through this. You have us, and we know what you are going through, and we want to help lighten your load.

 

: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.

#11 jlang

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Posted 06 July 2013 - 04:03 PM

Shelley, you are such a ray of sunshine!  I know in my rational side of the brain, that worrying does no good.  Unfortunately, my irrational side rules!  I guess I can just go about my business  and hope that nothing gets worse.  I do have to go see another specialist for the leg pain as I'm not ready to let that go just yet.  I like to shop and it's hard when your legs hurt so bad you want to cry!

   

My endoscopy results were also normal.   I haven't heard from her so I am going on the assumption that she didn't see any signs of sclero in the pathology.

 

I keep telling myself that I am 55, not 25 and things are going to go wrong.  Although I'm not ready to check out just yet, I am not a spring chicken. 

 

So, thanks for your support and words of encouragement.  I will carry on and wait until November for the next echo and if that shows PH I am going to ask for the right heart cath to know for sure.



#12 Nene

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Posted 07 July 2013 - 01:58 PM

Thanks for your encouraging post Shelley. I entirely agree with you. When I was first diagnosed I worried a lot about when the next symptom might appear. After a few months (and no new symptoms) I decided I wasn't going to let scleroderma stop me living my life.  

 

Since then I have completely retrained and have a whole new career. Yes, sometimes I get so very tired and yes, my aches and pains sometimes get me down but this is the only life I'm going to have and I will make the most of it whilst my health allows.

 

As I have read in some of Amanda's posts, there is life after a diagnosis of scleroderma ...... maybe not the one we intended but life is precious regardless!   



#13 Amanda Thorpe

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Posted 08 July 2013 - 03:25 AM

Hello Nene

 

Thank you for such an encouraging post, it will help so many people to know that it's possible to just go and live despite the best efforts of scleroderma! I hope you are able to do so forever more!

 

Take care.


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#14 jlang

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Posted 01 August 2013 - 04:50 PM

My wrists and hands have been killing me and I'm not sure but I think I can see my palms tightening. They are very very shiny I've been noticing as well.  I don't have any lesions or ulcers but both if I stretch my fingers they feel tight.  



#15 Shelley Ensz

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Posted 01 August 2013 - 07:36 PM

Hi Jlang,

 

I'm sorry you have some additional health concerns. Do you have a good primary care doctor who you can go to as things develop? 

 

If it sounds like a reasonable idea, please try not to "save up" your symptoms for your specialist appointments, but rather see your primary doctor right away.  That way you get your symptoms treated, and you never know what symptom might trigger an "aha!" moment for your doctor.  At the very least, it documents the issues and the records can be helpful when discussing matters with your specialist(s).

 

And let us know what you find out, okay?

 

: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.

#16 Joelf

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Posted 01 August 2013 - 10:26 PM

Hi Jlang,

 

Sorry to hear that you're experiencing wrist and hand pain; I can really empathise as I find that is one of the most debilitating problems with Scleroderma; it actually impinges more on my quality of life than my lung involvement does! (As we speak, I'm wearing wrist supports whilst typing. ;) )

 

Shelley has given you wise advice about consulting your primary doctor; I also find that gently moving my fingers and hands does help to keep them mobile. At first my fingers were very swollen and tight; once I was started on medication the swelling went down and the pain was not so intense, although they do hurt a lot now if I over use them. I've included couple of links to some hand exercises and also here which you may find beneficial.

 

Kind regards,


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