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Tested Positive ANA, New to This


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#1 sara89

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Posted 07 December 2014 - 12:31 PM

I am 25 year old female. I have been having digestive issues for about a year which led me to a couple different doctors. I had a barium swallow performed and it showed signs of GERD. I went to a family doctor that performed a full blood panel, it came back with positive ANA for scleroderma. I have no other symptoms besides the digestive issues. I have no skin tightening or fingers turning blue. I'm worried. I have a 4 year old son and husband that I could never imagine leaving. I haven't been able to eat or sleep since the news. My question is, is it possible to test positive but the disease only presents itself in the digestive tract? Why have I not developed other symptoms and is it possible that it will only be confined to my digestive tract?



#2 Amanda Thorpe

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Posted 07 December 2014 - 03:25 PM

Hello Sara

 

Welcome and firstly let me say that even if you do have scleroderma (I can't say either way) it is not an automatic redline to the morgue. I have had diffuse systemic scleroderma for 7 years now having initially been given at least 10 years at diagnosis. Sure, some people do die quickly, some after 10, 20, 30 years and, as it happens, most people find learning how to live with the disease its biggest challenge.

 

The answer to your question is, yes! Yes, it is possible to have a positive blood test but never actually develop scleroderma. Yes it is possible to have scleroderma without any actual skin involvement, scleroderma sine scleroderma or scleroderma sans scleroderma are exactly that. Have a look at sans because it says that Raynaud's and ANA may not be present and that the gastrointestinal tract can be involved.

 

I suspect that you may be on the cusp of many possibilities, sorry but there it is. The most important thing you can do for you and your family is to be treated by a scleroderma expert. As you have seen from my answer, scleroderma is a very complex and multifaceted disease, almost anything is possible so you really need to be under the care of someone who knows this.

 

Take care and keep posting.


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#3 judyt

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Posted 07 December 2014 - 04:14 PM

Hello Sara,

 

A warm welcome from me too.   Amanda has given you good advice about the possibility of Scleroderma and the best bit of that advice is to see an expert when you can.

 

My history with Sclero is long and boring!! but well worth taking note of.   Way back in the 1950's - yes that's right, last century, when I was a pre-teen I had a Gastric episode which caused my Doc to order a Barium Meal (as it was called way back then).   I don't know the result of that but about 10 or 11 years later I developed Raynaud's Phenomenon and Migraine.   Nobody could tell me why, it was just one of those things some people get.   Then a few years later I developed funny red spots on my hands and face.   Once again shrugged shoulders but no info.

 

As the years went by I began to have bowel problems and in fact needed surgery to repair a full-thickness bowel prolapse.   By this time I was 50 years of age and really wondering what was the matter with me.   I had odd fingers.   Odd because they were sometimes fat and sometimes thin.   Sometimes a bit arthritic but nothing to stop me doing what I wanted to do in the way of sewing and hand crafts, gardening and the like.   My Oesophagus became restricted and I found it hard to swallow properly.    After a Gastroscopy I had my Oesophagus dilated and that fixed that.

 

Next really bothersome thing was vascular incompetence in my legs needing some of my surface veins stripping for aesthetic reasons really but after that I started with ulcers around my ankles.   It was this problem which sent me to the Vascular Clinic at our local hospital where an observant and thoughtful young Doctor asked me if I had ever been told I had CREST Syndrome.   Never had heard of it but that was what I have sure enough.

 

That was 2003 and I was 59.   I had got through life reasonably well, with only fairly small problems which could be fixed, one at a time  BUT looking back now, I can't help but think that it could have been helpful if somebody had recognised what was going on earlier in my life and I could have had more helpful advice and treatments.   At 70 years of age I am not so well at all but I have never had any skin involvement and in fact look the picture of health.   At my hospital check last week the Cardiologist said "you are looking well"  then proceeded to tell me what might be going on these days.

 

So the moral of my story is, be thankful somebody has found something in your bloods that MIGHT indicate something is going on with you.   Be thankful that medical science has moved on as quickly as it has and get yourself to a Scleroderma Expert for some sound advice.

 

Best wishes from the upside down side of the world,

Judyt



#4 sara89

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Posted 07 December 2014 - 05:32 PM

Thank you Judyt and Amanda.

 

I have read about sine and as it being a possibility, it does scare me. I'm worried that if it is sine I may have other problems going on inside that I don't know about and could be bad. I also feel that ever since my blood work I have been thinking my forehead is tightening.  If it's all in my head cause I'm scared of it or if it's reality. My jaw has also been popping for about a year now which is a sign as well. If I have this disease, do you know if it's possible that it can only affect my GI tract and not spread? Thanks for your support!



#5 sara89

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Posted 07 December 2014 - 07:32 PM

What is a tendon friction rub??

#6 judyt

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Posted 07 December 2014 - 11:31 PM

Hi Sara,

 

Worrying won't help, nor can imagination make anything more or less real.   Everybody with Scleroderma is an individual, nobody has exactly the same story as anyone else.   Similar stories but not the same.

 

What will be will be, and none of us here are medically trained.   Even if we were experts we still wouldn't really be able to forsee what is in store for you.   What I know is that my disease has not really spread outside my GI tract.   I don't have any joint or skin problems so I can't tell you what a tendon friction rub is.

 

Judyt



#7 greypilgrim256

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Posted 08 December 2014 - 02:34 AM

A tendon friction rub is when you place your finger or hand on one of your joints that is by the affected area, in my case, my knuckles, as the hands are typically the first to be affected, and you can feel and sometimes hear a grating leathery sound when you flex or extend your joint.  They are almost exclusively a symptoms of diffuse scleroderma.  



#8 Shelley Ensz

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Posted 08 December 2014 - 08:34 AM

Hi Sara,

 

Welcome to Sclero Forums. I'm sorry that you have concerns about scleroderma and send my best wishes to you.

 

I'm more concerned right now about your emotional state than your physical one. As others here have aptly pointed out, scleroderma is not an automatic death sentence but stress can worsen any of its symptoms so it is a really great idea to begin managing this emotionally, right away.  Not eating or sleeping could even put you at risk for worse things, like infection, that would be much more imminently life threatening than scleroderma could ever be. And it worries me that you might be coming into this whole realm quite unprepared to deal with stress and uncertainty.

 

The general rule of thumb they give is that if we don't land on our feet emotionally within a few weeks of encountering bad news or upsetting situations, we should see our doctor.  It means we might benefit a great deal from counseling or medication. It is very possible, and many of us here have pulled it off, to adjust happily to the challenges of scleroderma and to maintain delightful love relationships and to still be a playful and loving parent. But it does take a lot of support, understanding, and determination to make all that happen and not be entirely derailed by self-pity trips and depression.

 

There are a few steps you can take to help you land on the sunny side of this street, for you and your family.  The first is to arrange to see a listed scleroderma expert, who could give you the facts of the situation.  It's possible your blood test was just an error.  The antibody might be gone the next time it is tested!  Your symptoms might just be usual ones, and not scleroderma ones. Most chronic illnesses tend to progress about the same way they started, and that is typically very slowly, and very often those symptoms are either something you can live with or that can be successfully treated. And did you know some doctors shy away from telling a patient their diagnosis if they feel they are too depressed or anxious to deal with it?  Therefore, if you want to know the truth of the matter as soon as possible, you want to level your emotional reaction as soon as possible.

 

I do, really and truly, understand the panic of suddenly being confronted with any disease, not to mention, scleroderma. It's great to acknowledge that, to get your feelings out there so they can see the light of day and be addressed.  So I'm thinking that now you should see pretty clearly that you have to things to address, one being an appointment with an expert to determine if indeed you even have scleroderma and if so what can be done about it. And the other, to do whatever it takes to stabilize yourself emotionally, which probably entails setting an appointment right now with your primary care doctor to get the ball rolling.

 

Unless you happen to know for sure that you are the sort to hit the panic button early on, but then you always manage to pull yourself together quite rapidly, too. But if you have never faced anything this huge before in your life, you may not have yet had the chance to develop the strong coping and self-care skills, which are called for now. 

 

I tend to hit the panic button early on, and just fall apart at the seams, but then I am also quickly restored.  Even so, I have found counseling and even medication helpful -- sometimes even indispensable, I'd say -- to guide me through some of the rough patches of life. So please let us know what you are doing to stabilize yourself, and to get the facts of the matter from an expert.  You might feel hugely relieved just to make an appointment.  Or just to read over this thread. We're here for you.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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#9 Joelf

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Posted 08 December 2014 - 10:23 AM

Hi Sara,

 

Welcome to these forums!

 

I'm sorry to hear that you are worrying over possible Scleroderma symptoms; sometimes the uncertainty can be the worst thing of all and the others have given you very sound advice. Often the fear of what may happen can be far more scary that what actually does happen and obviously at this stage it's impossible to ascertain whether or not you will develop the full blown disease. However, even if the worst should happen and you are diagnosed with Scleroderma, as the others have said, it's by no means the end of everything as you know it and as it affects everyone differently, you may find that a lot of the dire warnings you've heard about it may not apply to you.

 

I would reiterate everyone else's advice about consulting a Scleroderma expert; this complex disease does require a specialist who understands it's little idiosyncrasies and can ensure  you receive the best treatment available.

 

Kind regards,


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#10 Amanda Thorpe

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Posted 08 December 2014 - 03:03 PM

Hello Sara

 

Shelley's right, it might not be scleroderma but until you know every little twinge is going to be a new symptom whether it really is or not. See an expert, now. Or when they give you an appointment.

 

You might find our emotional adjustment resources helpful, they have been written and presented by people with scleroderma who have been where you "think" you are. I'll say "think" until we know for sure!

 

Take care.


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#11 Margaret

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Posted 08 December 2014 - 04:36 PM

Hi Sara

Welcome to the forums. I've been on for about 8 yrs now because my son had esophageal dismotility, at the age of 18, and we were thrown into the world of scleroderma. His gastric doc ran all the blood work for scleroderma and his came back with a + ANA, super high SED rate, and + Anti-RNA Polymerase 1/111. His only symptom was the esophageal dismotility and the gastric doc said *sine scleroderma*. Well, it took forever to get into the scleroderma expert and I was panicking the whole time.....thinking he'd die very young because of some unknown, weird, off the wall disease!! They have come a long way in 8 yrs!! The expert said no to scleroderma, but yes to UCTD (Undifferenciated Connective Tissue disease). After 9 months of testing and figuring out what to do next, they put him on Plaquinel. It's an anti-malaria drug that is suppose to *jump start* the immune system. I never understood that explanation since scleroderma is the immune system attacking your own body!! Anyhow....it worked and within 2-3 months, his dismotility eased up and he was doing OK.

Over the past years, he has developed mild Sjogren's and Raynaud's. His biggest complains but is chronic pain in his legs and fatigue. Oh....also....depression. His doctor told me that the same autoimmune issues that attack the rest of the body may also affect the brain chemistry. Please, do not hesitate in seeking help for depression/anxiety/sadness etc, especailly since you have a young child at home. The leaders of this forum are great and will walk you through anything. :emoticons-clap:l

Take care, Everyone.
Margaret
Mom to Gareth, 26 years old, DS/ASD

#12 sara89

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Posted 08 December 2014 - 07:44 PM

Thank you all so much for your replies and support. I have been feeling better the last couple days. I have an appointment in a couple days and will hopefully have some answers. I don't think I mentioned that I tested positive for antibodies about 6 months ago but they never looked into it until I requested a full panel recently. Its just weird that I would possibly have the Ana for several months but only have GI problems. I know all is possible with sclero. Is it also true that the scl-70 antibodies are is only associated with diffuse? Thanks everyone for taking the time to reply to my concerns

#13 Kathy D

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Posted 08 December 2014 - 09:56 PM

Hi Sara

Welcome to the forums. I've been on for about 8 yrs now because my son had esophageal dismotility, at the age of 18, and we were thrown into the world of scleroderma. His gastric doc ran all the blood work for scleroderma and his came back with a + ANA, super high SED rate, and + Anti-RNA Polymerase 1/111. His only symptom was the esophageal dismotility and the gastric doc said *sine scleroderma*. Well, it took forever to get into the scleroderma expert and I was panicking the whole time.....thinking he'd die very young because of some unknown, weird, off the wall disease!! They have come a long way in 8 yrs!! The expert said no to scleroderma, but yes to UCTD (Undifferenciated Connective Tissue disease). After 9 months of testing and figuring out what to do next, they put him on Plaquinel. It's an anti-malaria drug that is suppose to *jump start* the immune system. I never understood that explanation since scleroderma is the immune system attacking your own body!! Anyhow....it worked and within 2-3 months, his dismotility eased up and he was doing OK.

Over the past years, he has developed mild Sjogren's and Raynaud's. His biggest complaint is chronic pain in his legs and fatigue. Oh....also....depression. His doctor told me that the same autoimmune issues that attack the rest of the body may also affect the brain chemistry. Please, do not hesitate in seeking help for depression/anxiety/sadness etc, especailly since you have a young child at home. The leaders of this forum are great and will walk you through anything. :emoticons-clap:

Take care, Everyone.
Margaret
Mom to Gareth, 26 years old, DS/ASD



I am a bit confused on the ANA Scleroderma. I was under the impression ANA could and could not indicate autoimmune, as well as false positives.... And that anitcentromere or scl-70 indicated which type of Scleroderma? I know my ANA pattern but did not know it was indicative of Scleroderma but rather any host of autoimmunes as well as a false positive.

Regardless of the type of Scleroderma, I have found antidepressants to be of great help. I have tried many over the years and some helped me more than others. It was trial and error for me to find the best one, especially when I took birth control pills. There are even some antidepressants now that help with pain.

I would first find out if you were tested beyond ANA as many have this without being sick, and then find out which anitbody is positive. That would be much easier to navigate.
Diffuse Scleroderma Diagnosed March 2009

#14 Margaret

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Posted 09 December 2014 - 02:44 AM

Hi Kathy,

 

The expert said his ANA was *speckled pattern with diffuse cytoplasma*, consistent with scleroderma.  I haven't checked into that for years, so maybe those criteria have changed.  Very little is published about the + Anti-RNA Polymerase antibodies, too, except that he's more susceptible to renal involvement/failure.

 

Have a good day, Everyone.

Margaret



#15 Kathy D

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Posted 10 December 2014 - 09:28 PM

Hi Kathy,

 

The expert said his ANA was *speckled pattern with diffuse cytoplasma*, consistent with scleroderma.  I haven't checked into that for years, so maybe those criteria have changed.  Very little is published about the + Anti-RNA Polymerase antibodies, too, except that he's more susceptible to renal involvement/failure.

 

Have a good day, Everyone.

Margaret

 

 

Margaret, somehow I have conveniently forgot alot of things I studied years ago, thanks for looking it up :)  AND, I was given 3 different results from 2 hospitals back then, no wonder I am still confused LOl.


Diffuse Scleroderma Diagnosed March 2009

#16 miocean

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Posted 11 December 2014 - 04:24 AM

My ANA at the time of diagnosis was speckled. I also had many of the symptoms but it was the ANA test that got me the definitive diagnosis.

 

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