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Positive ANA then what?


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#1 Sugarplum Fairy

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Posted 01 July 2016 - 12:19 AM

Hello!

 

Congratulations on the fantastic job you've been doing on scleroderma. It is hard to locate cross-checked information over this illness in my country and I've learned so much just by browsing forum topics and the site's main categories. My heart goes to everyone out there.

 

I'm cutting straight to the chase:   I'm a designer who has started working as a waitress in a restaurant the past 2 months to make ends meet and I'm undergoing through terrible stress because both my parents are gravely ill and my child is 3 years old.

 

I have been experiencing a problem with my eye since February - at first it was accompanied by horrible migraines so my GP ordered an MRI scan that came out clear as a bell. I've got astigmatism so I just started wearing my glasses more often and the horrible headache was gone, although the slightly burning sensation in my eye never left  - I tried artificial tears that didn't do any particular difference, it always affects one eye.

 

I've also experienced shooting pains on my right arm and performed a cervical MRI which showed various herniated discs and bone spurs at the ripe age of 35. The ortho doc ordered a couple of detailed blood tests to put my mind at ease because I was complaining for rheumatic-like pains (knee pain mostly). The blood tests were good (normal CRP & ESR rate, negative Anti ds-DNA, negative RF, normal C3& C4 component levels etc) BUT my ANA came out positive 1:160, speckled pattern. That was around April '16.

 

My September '15 ANA panel was negative. Of course I started googling away the pattern result and scleroderma appears to be in the list of possible diseases associated with. Since then, my arthralgia-like pain has been more intense and recently fingers and knuckles are in pain with no evident swelling. I've got combination skin on face but rest of the body is mostly naturally dry / sensitive and my rosacea is in full bloom. I've visited 3 rheumatologists and a dermatologist and everybody dismissed my symptoms and associated them to stress. They keep telling me that half of the healthy population out there has a positive ANA panel and I shouldn't fret about it.

 

A couple of weeks ago, I had another blood test, my ANA seems even higher (1:320, speckled pattern) whilst everything else remains perfectly normal.. All doctors seem totally indifferent about the rise, they prompted me to perform further testing myself at a big hospital lab and avoid private labs.. They told me that if I insist I could perform further evaluation (Anti-Smith, Anti-RNP, Scl-70, Anti-La, Anti-Ro, ΑCA), it costs around around £90 and I cannot afford it so I'm basically driving myself crazy with self-diagnosis.

 

I just wanted to know, if you guys feel I'm just worrying too much? Overall my symptoms are the following ones: general malaise, stinging sensation on one eye (same eye always), pain in fingers and knuckles with no swelling and no pain when joints are being pressed; my index fingers feels as someone has crushed them, awful burning sensation on my arms and the top of my hands, calluses on right palm, my skin feels sensitive and sore and area around the mouth feels sore as well..

 

Never experienced Raynaud's, no ulcers, no evident tightening. Do these symptoms sound anything like scleroderma? I hope I don't sound totally insensitive and silly towards people with genuine symptoms.. I just don't know what to do with myself. Thank you for your patience.



#2 Shelley Ensz

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Posted 01 July 2016 - 07:43 AM

Hi Sugarplum Fairy,

 

Welcome to Sclero Forums. I'm sure you know by now that we aren't doctors, and the vast majority of us, including me, don't even have a valid first aid certificate.

 

I'd refer you to our resources on Difficult Diagnosis, which includes videos and symptom checklists. But, without having any Raynaud's or tight skin or pulmonary fibrosis, etc. your odds of having scleroderma are probably slim to none.

 

Since you do complain of some eye pain and some joint pain, and positive ANA, you might be tending towards some Sjogren's symptoms.  Bear in mind that about 50% of people who have a few symptoms of connective tissue diseases and positive ANA never go on to develop a full blown version of anything, so your diagnosis might always remain as being simply "arthritis".

 

As to whether you are worrying too much, well, that really isn't a question for us. What they recommend is that if we are very bothered or upset for two weeks after receiving a serious diagnosis, or the worry of one, then we should ask our doctor about it. Anxiety and depression can emulate and complicate many illnesses; depression can even cause joint pain, fatigue, and troubled sleep. Anxiety can ruin our quality of life. And all unnecessarily, since at least those aspects of illness are treatable.

 

Basically, most people might be able to say, huh, I must have some mild form of arthritis, so I'll have an annual physical so that they can keep an eye out for any internal organ involvement. If your reaction is more than that, then worry can exacerbate symptoms, so acquiring some additional coping skills could help regardless of whether your symptoms ever worsen, or not.

 

Time will tell what's going on. If I recall correctly, Sjogren's usually takes an average of ten years to be diagnosed. That's because symptoms are generally fairly mild, slowly progressive if at all, and usually easily self-treatable, such as by eye drops or moisturizers or NSAIDs. One thing you could do for that is to have your eye doctor do a Shirmer's test for dry eyes. It's painless and is not invasive; it's just a tiny bit of paper put in the eyelid for a few minutes to see how wet the paper gets. Flunking Shirmer's isn't fully diagnostic of Sjogren's, but it is one little piece of the puzzle.

 

Worrying or excessive doctoring isn't very likely to speed up the process, in fact, it can entirely derail it if your doctors tag you as (an untreated) worrier, they may dismiss all your symptoms, or figure that you are exaggerating them. So, the more you can prove you have your emotional reaction under control, the better.

 

Also, cut yourself some slack for being suspicious and concerned and for trying to get answers. It sounds like you and your doctors have ruled out any imminently life-threatening illness, as you are not complaining of heart, lung, kidney or liver involvement, nor signs of pervasive cancer, and you can even safely rule out rapid onset of severe diffuse scleroderma, too. 

 

So, although some arthritis may be setting in -- which is a pity, of course, but it is usually quite manageable -- you are joining a crowd of millions and mlliions of people worldwide in that regard, so hopefully you will not feel quite so alone in the process, and quickly find your stride in coping with it successfully. At least, we all surely hope so!

 

: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.

#3 Joelf

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Posted 01 July 2016 - 07:47 PM

Hi Sugarplum Fairy,

Welcome to these forums!

I'm sorry to hear that you've been experiencing worrying symptoms and are concerned about possible scleroderma. I would also reiterate that we do not have any medical qualifications; my first aid certificate ran out a few years ago and was only really any use should I come across anyone having a heart attack or needing a broken leg splinted.

As Shelley has advised, the whole process of diagnosis is very complicated and the symptoms you describe could equally relate to many other illnesses. Also positive blood tests on their own do not necessarily mean that full blown scleroderma will ensue and vice versa; many of our members have negative blood tests and yet have the clinical symptoms that have led to a scleroderma diagnosis.

I'm sorry to hear that your parents are gravely ill; the stress of that alone can exacerbate any sort of autoimmune problem and also the strain of not knowing the cause of your symptoms can be one of the worst worries of all. As Shelley has said, your doctors do seem to have ruled out any immediate life threatening illnesses and although it is hard to relax with so much to worry you, I think that you may have to wait to see whether any further symptoms develop and then go from there.

Kind regards,

Jo Frowde
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#4 Sugarplum Fairy

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Posted 03 July 2016 - 01:51 AM

Hi girls, thank you so much for the speedy replies! Your cool, calm and collected attitude and your

informational advice means so much to me. A couple of days ago, the Greek Society of Rheumatology held

an awareness event for World Scleroderma day in the centre of Athens (Sydagma sq.) so I decided to go

and have a look. Sadly, the rheumatologists seemed totally unfazed and upon discussion they only offered

me a couple of pamphlets and bade me farewell, chalking up my symptoms to stress, looking forward to grab

a bite from the local food canteen. I've learned so much more from Sclero.org, NYT articles and the Johns

Hopkins Scleroderma section. 

 

@Shelley: what does pulmonary fibrosis look like? My fingers feel a bit swollen (fingertips) but they aren't -

this summer my skin has become increasingly sensitive towards synthetic polymers - my Ηavaianas

suddenly feel unbearable - makes my skin red.

 

@Jo: thank you for your kind words Jo, my parents' situation is non reversible and 

it breaks my heart because they're both youngish. I want so much to be around to see

my child grow up. I'm looking for a defence to uncertainty which is an unattainable task.



#5 Joelf

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Posted 03 July 2016 - 02:19 AM

Hi Sugarplum Fairy,

I have pulmonary fibrosis non specific interstitial pneumonia (NSIP) and the X-rays of my lungs looked just as if they were covered in candy floss (the correct terminology is "ground glass").

However, most of that was actually inflammation and fortunately it was caught before it turned into irreversible fibrosis, so I was very lucky. If I have to have interstitial lung disease, then NSIP is probably the best sort to have!! :wink:

Kind regards,

Jo Frowde
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#6 Sugarplum Fairy

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Posted 03 July 2016 - 04:43 AM

So sorry to hear about your pulmonary fibrosis Jo. Hope you'll feel better soon! I was just wondering,

if you guys experienced finger pain prior to the sclerodactyly stage? Do fingers hurt before swelling and curling? Is it a rapid process?



#7 Joelf

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Posted 03 July 2016 - 05:14 AM

Hi Sugarplum Fairy,

I was very lucky and the NSIP was treated successfully.

Fortunately I don't have sclerodactyly; thankfully, it doesn't always follow. In the beginning one of the symptoms I had was very swollen fingers and this persisted until I was put on medication. Unfortunately, at that stage I hadn't realised that this could possibly be one of the scleroderma symptoms and I spent an absolute fortune having all my rings resized, only to have to get them resized again, once my fingers went down!!

I would just point out that swollen fingers can be a sign of other health problems, not only scleroderma.

Kind regards,

Jo Frowde
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#8 Shelley Ensz

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Posted 03 July 2016 - 09:45 AM

Hi Sugarplum Fairy,

 

Pulmonary fibrosis shows up on x-rays and CT scans of the chest, which either show inflammation (the ground glass that Jo had) or fibrosis (hardening) of the lungs.  If it is caught in the inflammatory stage, like Jo's was, it is treatable. 

 

Skin sensitivity and calluses are not symptoms of scleroderma. Although a callus is a type of skin thickening, it is different than the hardening caused by systemic sclerosis, which is preceded by swelling and then gradually hardens into a smooth and shiny appearance, typically starting in the tips of the fingers and moving upward from there.

 

As I understand it, the hand pain with scleroderma is most prominent during the swelling and inflammation stage. Offhand, I don't recall hearing anyone complain of significant hand pain for a long time prior to the onset of other symptoms (like swelling, Raynaud's, carpal tunnel, etc.)

 

For ANA, a speckled pattern is much more common in lupus, whereas scleroderma tends to be more of the nucleolar pattern. But keep in mind, blood work can be false positive (or false negative) so it is the specific, proven symptoms that are paramount in diagnosis of connective tissue diseases. About 3 to 15% of healthy people have positive ANA, so the presence of antibodies does not guarantee the presence, or eventual development, of disease.

 

: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.

#9 Sugarplum Fairy

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Posted 03 July 2016 - 08:54 PM

Will keep monitoring my symptoms. Thank you so much for everything.



#10 Sugarplum Fairy

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Posted 13 July 2016 - 09:38 PM

Hi guys, I was just wondering about something else.. is skin tightening / itching considered one of the initial symptoms as well?

How does the skin tightening sensation feel exactly? I've had a couple of spots that itch me but not terribly (above the eyebrow area and the scalp). Comes and goes..



#11 Joelf

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Posted 14 July 2016 - 10:05 AM

Hi Sugarplum Fairy,

 

Skin tightening can be an initial sign of scleroderma; however, I would emphasise that it's only one symptom and personally, I've had no skin tightening at all, apart from a hardly discernible shiny area at the very tip of my fingers, which frankly you'd be hard pressed to notice at all.

 

Itching skin can be a sign of many different health problems, not necessarily scleroderma.

 

Kind regards,


Jo Frowde
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