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The trouble with diagnosing

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#1 ErinF


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Posted 09 March 2011 - 01:03 PM

Wow, it's been a long while since I've been on the board. A few years ago, after experiencing a year of weird symptoms (a few random episodes of Raynaud's, whole body pain, and fatigue), I was given a tentative diagnosis of systemic sclero. I had high ANA, and tested positive for SCL-70, repeatedly. I was eventually referred up to a rheumatologist in Madison, WI, who declared that I did NOT have sclero, but DID have Ankylosing Spondylitis and Sjogren's Syndrome. (I also have Hashimoto's--I just love how these stupid autoimmune disease cluster together. Everyone I know thinks I'm a crazy hypochondriac). I have since tested positive for the HLA-B27 gene marker, and my ANA varies--sometimes it's positive, sometimes it's not. After repeated positives for SCL-70, I finally tested negative and haven't tested positive again--not once, in almost 3 years. I was relieved--AS isn't great, but it's not as debilitating as sclero and not as frightening. I remember the early days after being told I might have sclero--I cried and cried and cried and cried. Thanks to the support of people on this board I made it through.

Just recently, I switched to a rheumatologist closer to where I live, and although all my records were transferred from Madison, he wanted to run all new tests and take new x-rays. Understandable. My blood tests came back pretty good--not a whole lot of inflammation, negative ANA and negative SCL-70. Good news! But my x-rays were disappointing. My left sacroiliac joint is almost completely sclerosed and fused, and my right is starting. Okay, that's expected with AS. However, what shocked him AND ME was my chest x-ray. Lung fibrosis. Incredibly rare in AS, even rarer in someone as young as me (39) without super severe symptoms of the disease. And the fibrosis is very obvious on the x-ray.

My rheumatologist was incredibly positive about the whole thing, telling me that there is a new drug called Simponi that is showing great success with arresting AS (I've been on Indomethacin, which frankly, stinks). But I can't help it...the fear about sclero is creeping back. Maybe I do have it after all? Maybe all those positive ANA and SCL-70 tests came when the disease was just starting? That's what my original general practitioner thought--she was convinced that I was in the earliest possible stages, but the expert up in Madison said Nope.

I finally felt like the fear of sclero had gone away and that I no longer worried about symptoms suddenly coming on fast and strong, but with my history and now this fibrosis in my lungs, I can't help but wonder if perhaps I have it, it's just "mild." Is that even possible?

#2 Amanda Thorpe

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Posted 09 March 2011 - 04:57 PM

Hello Erin

Good to see you back again although I realise you may prefer not to be here.

The difficulty with getting a scleroderma diagnosis is that there is no one definitive test for it, for example you can have all the positive blood markers and never develop a symptom and have lots of symptoms and no blood markers, I am in the latter group incidentally. This is why a scleroderma diagnosis is best made with the combination of symptoms, test results such as ECHO's, lung function tests, chest CT's to mention a few and blood work.

I suppose you could always ask your rheumatologist to refer you back to the scleroderma expert in view of the new symptom of pulmonary fibrosis but do you think that would put your mind at rest if you got a referral? Apart from the pulmonary fibrosis do you have any other symptoms that would suggest scleroderma because I would guess your rheumatologist would be keeping an eye out for new symptoms that could alter your diagnosis.

I think that a diagnosis of Ankylosing Spondylitis, Sjogren's and Hashimoto's is enough for you to contend with!

Take care.
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#3 Shelley Ensz

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Posted 09 March 2011 - 06:59 PM

Hi Erin,

Well, not everyone you know considers you a crazy hypochondriac -- certainly, we don't!

Welcome back, we've really missed you. I'm sorry it's over more/worse symptoms. But why don't you just settle in here? We cover the whole enchilada of scleroderma "and related illnesses" so it's a safe place to land, come what may.

Warm Hugs,

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#4 Lynnie


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Posted 09 March 2011 - 08:48 PM

Hi Erin
Welcome back to the forums and hope like me and others find some comfort and support.

Sadly and amazingly, the human body is such a mish mash of the weird and wonderful, that with scleroderma, my experience of it anyway,3years post diagnosis, I had symptoms of a weird and un-explainable nature long before that I think. I never once thought I had it or even thought it even existed till it went into full blown and a confirmed diagnosis was made.Yes, I was petrified as I'm a qualified nurse of 30+years and I knew what it was,and what the doctor was saying it to me. Well wow,I went into my appointment as a normal be it off par person,and came out of the room as a chronically sick,rare diseased person who thought oh my I'm going to die! I came to the forums and realized I wasn't going to, not yet anyway!.

What you must try and do is take everything in your stride, whatever comes along erin. If and I say if, a confirmed diagnosis of scleroderma comes,the disease is very difficult to pin down in the early stages as it throws off different issues that can be mistaken for other conditions! There IS life afterwards,not as it was before and not always easy,but everyone here has been there and can offer you support,and the benefit of our experience of dealing with it.

I do hope sincerely that you have not got it as I would not wish that on anyone. Hope your appointments and investigations give you an answer so that you know what it is exactly,and what is the problem.

keep us posted how you get on ok

#5 Joelf


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Posted 10 March 2011 - 03:32 AM

Hi Erin,

How nice to hear from you again, even though it's because you've got fresh concerns about your health. I'm sorry that your worries about Scleroderma have resurfaced.

As the others have said, Scleroderma is such a difficult disease to diagnose and we have a link here which I hope you will find interesting. Being considered a hypochondriac is all part of the course, as the average person has never heard of Sclero, or indeed many of the other autoimmune problems you're suffering with. ( A lot of people I know consider me to be a bit peculiar, and just humour me anyway!! :wacko: ;) )

It does sound as if your rheumatologist is keeping a good eye on the pulmonary fibrosis, so you'll be in a good position should you need to have more treatment. I also have lung fibrosis, and was treated very successfully for it.

Do please keep posting and let us know how you are faring; here's a :emoticons-group-hug: (I'm the red one!!)
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#6 Sweet


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Posted 10 March 2011 - 01:20 PM

Hi Erin,

It's so wonderful to see your sweet face again. The whole world of auto immune is a confusing one. It keeps the doctors, and us guessing, and on our toes! I would be worried just as you are, but it sounds like you've found a great doctor. He was thorough, did the right tests, like to test things out for himself, and he sounds like an upbeat person, that will make it easier for the two of you to work this whole thing out.

I'm thinking of you! :emoticons-group-hug:
Warm and gentle hugs,

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#7 debonair susie

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Posted 11 March 2011 - 01:07 PM

Hi Erin!

I totally agree! Your doctor sounds like a keeper! 3 years ago, consider that baseline information for your doctor; now, with the new tests being done, that lets your doctor (AND you) better understnd what you are now dealing with.
Technically, it gives your doctor alot more information on how to better treat you and it sounds as though this doctor is heading in th eright direction.

Please hang in there and keep us posted with how you are doing? Also know that we DO care about you and would appreciate updates more often?
Special Hugs,

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