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Biomarker for Diffuse Scleroderma skin has been discovered!


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Mixed feelings - results!


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#1 smanda

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Posted 07 July 2009 - 08:03 AM

Hi all ...

Had LFT today .. not sure whether I'm relieved or not.

Spirometry fine .. around 105% of predicted value. The DCLO was about 82-84% of what I should achieve. I know this is within normal limits but still have odd breathing and am not wholly convinced.

My barium swallow showed some oesophageal dysmotility and reflux (lax LES).

My sclero specialist will be coming back to me with her view of the results but she had wanted to discharge me completely. She is convinced I don't have anything but perhaps the dysmotility will make her rethink.

I do find it hard to believe that this disease could be affecting my lungs when just 9 months ago I was told the odds of me having anything were virtually nil and of developing anything was unfeasibly low (based on having raynaud's, negative immunology and normal capillaries).

What do you guys think? Is it common to have ILD without any other overt signs?

Am I right in thinking that the disease would have been active for at least a year or so to cause any lung damage that I can feel? It started 6 years ago but went away and only started up again about 15 months ago. My ESR, CRP, C3, C4 are normal.

I also have stomach problems, severe diarrhea and cramps on and off which is another worrying sign.

No skin involvement that I can tell at the moment.

Thanks for listening. I am sitting here with a perplexed frown on my face .. it's all so enormously confusing.

Happy days to you all.
Amandaxx

#2 Shelley Ensz

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Posted 08 July 2009 - 01:15 AM

Hi Smanda,

I'm sorry you are still going through testing and still wondering about diagnosis. I'm giving you an extra hug while you wait for more input from your doctor.

I'm a bit stumped trying to answer one of your questions, which is, "Is it common to have interstitial lung disease without any other overt signs?" Okay perhaps I'm stumped because I'm not a doctor! But I'd venture to say, "No," because it's my understanding that pulmonary fibrosis usually shows up quite clearly on CT scan and, sometimes, like in my case, even on standard chest X-rays. (Will someone please correct me if I'm wrong? I'm probably in over my head here.)

And, it's my understanding that a person can even have fibrosis of both lungs that shows up on imaging without necessarily having impaired pulmonary function or low DLCO's; it depends on the amount of scarring, I suppose, and how well the lungs have otherwise compensated for it, and whether the inflammation and fibrosis are stabilized or still progressing.

Truly, I'm blathering here. I'd be tempted to say that with a DLCO still in the Normal range that the doctor will probably conclude that the test is normal. Plus, there are many causes, other than scleroderma, for a low DLCO, even if it was in the Low range. And there are about 1,398 causes of shortness of breath, including exercise, exertion, stress, infections, poor physical condition, etc. So without specific lung findings on imaging, it would probably be back to the drawing board to peg a cause. The most important thing is that major life-threatening issues are ruled out, like lung cancer, tuberculosis, etc. I am assuming, of course, that you have already had imaging studies done (chest X-ray, CT scan).

Normal capillaries along with normal negative antibodies are hugely in your favor for escaping a scleroderma diagnosis. But was that finding nine months ago, or current?

Let us know what your doctor says. Sometimes people with a few "extra" symptoms need to be monitored annually for a few years after developing Raynaud's, to be fairly certain they are out of the woods for full blown connective tissue diseases.

It's just so hard to not know if or when the other shoe is going to drop, and if it does, how hard it is going to land! But most people who have just a few symptoms of connective tissue diseases never ever go on to develop a full-blown, diagnosable connective tissue disease. Which is either the good news or the bad news, depending on which angle of it you are looking at. The good news is, their life is not imminently threatened; the bad news is, that is an awful lot of uncertainty to learn how to cope with!
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 debonair susie

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Posted 08 July 2009 - 06:38 AM

Oh Amanda...

To have words of reassurance for you...

It's easier said than done...to try not to worry when all of this is going on.

However, please try to take one day at a time, put one foot in front of the other and stockpile that energy for that wonderful holiday you will be going on soon.

I am certainly not trying to diminish your concerns because we know how real they are, having experienced them ourselves for our various issues.
Yet, until you hear otherwise from your dr(s), remember...you are doing what you can do.

Shelley... very eloquently I might add...was very helpful with her overview of the information you shared with us.

Still, it would be so much easier if we were all like paper dolls, but we are so unique, which makes it all the more exasperating...

...which is where our coping skills come into play.

As we wait WITH you, here are a few more {{{soft hugs}}} to tide you over.
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#4 CraigR

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Posted 08 July 2009 - 06:50 AM

Smanda,

You and Shelley have touched on a subject where I had some very peculiar experiences and difficulty getting a diagnosis.

Several years ago I took up swimming. After about six months of vigorous swimming, 5 or 6 nights a week, I noticed that I had to stop occasionally to catch my breath, while others in obviously worse condition kept right on swimming. I also noticed a similar effect when hiking.

I took a simple spirometry test (blowing into a device shaped like a gun), and had values of 120% to 190% of expected normals - outstanding! The doctor said I didn't have a problem (isn't it fun when a doctor calls you a liar?).

I sought out a specialist and discovered that my "supranormal values" were a sign of lung disease! Apparently, when faced with difficulty, along with a great deal of exercise, the lungs compensate, and this is what happened to me. I think this is what Shelley mentions as "how well the lungs have otherwise compensated for it".

It seemed obvious to me that, though I was moving plenty of air, I wasn't making good use of it. The test for this is called "diffusion", and measures the amount of oxygen that the lungs absorb. My value was 64%! So now we knew there was a problem.

But I was told that I had mild pulmonary fibrosis - not enough to account for my breathlessness. It took another specialist to correctly diagnose pulmonary hypertension - not fibrosis.

So be sure you know your "diffusion" value! For me, it has been the only PFT value that was truly useful, and the hardest to get, since it is not part of the very simple test.

Craig

#5 Jeannie McClelland

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Posted 08 July 2009 - 07:08 AM

I had pretty much the same experience~ I've always been active and love sports and the outdoors. When I complained of being short of breath and a persistent non-productive cough, both spirometry and a PFT were ordered. The results of the PFT showed "an isolated diffusion defect" which wasn't followed up on because the internist saw the spirometry results were fantastically good. He diagnosed asthma, I challenged the diagnosis, went to a center of excellence for lung and autoimmune issues and came away with a diagnosis of both interstitial lung disease and pulmonary hypertension. The pulmonologist expressed surprise that the diffusion defect hadn't been investigated further.



I know the admin staff of the various medical facilities I attend now must get really tired of me, but I now want to have a copy of every test result and feel obligated to educate myself as to their meanings and possible effects on my health. I guess knowledge is not only power, but safety. :)
Jeannie McClelland
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#6 Peggy

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Posted 08 July 2009 - 08:53 AM

I had a lung CT done in February that showed a lung nodule. I had it repeated in May and now it showed significant ground glass in my upper right lung. So had it repeated in June. The ground glass that was such a worry for my pulmonologist was gone! First of all I didn't even show any signs of having a lung infection going on. Secondly, some how my body was able to fight it off on its own and its gone. Apparently these can be extremely dangerous and she was planning on doing a bronchoscopy. So in my opinion I believe we can have things going on in our lungs and we aren't even aware of it in some instances. Granted in alot of instances people will have a persistent cough or run a fever but I didn't have either. So now that my ground glass is apparently gone the nurse now says that my lungs don't sound good. So who knows. I'm as confused as you are in how they are able to monitor this in a fashion that keeps us safe other than being persistent in your doctor's visits and watching it carefully, as I don't show the physical signs to do it without the testing.

I wish you good luck and you've come to the right place for information and support.

Warm hugs,

Peggy

#7 smanda

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Posted 08 July 2009 - 10:23 AM

Thank you all again for your thoughts and wisdom.

Just to answer a couple of questions ..
I have had x-ray and PFTs, no CT scan
My capillaroscopy was about a year ago (but Dr said it won't have changed within a year)
I had another (negative) full immunology screen a week or so ago.

The specialist has said today that my barium swallow report was apparently 'normal'. How I misinterpreted what the radiologist told me I don't know .. he pointed out the reflux and said my motility was slow for someone of my age.

The specialist hasn't yet seen the LFT tests but said they were "excellent" from what I had told her - 105% spirometry and 82-84% diffusion.

I have therefore concluded that I'm giving up on this. If my lungs are ok and I don't have any major symptoms that need treating (which thankfully I don't) then I'm going to forget about everything and just live with these odd (hopefully, non-life-threatening) symptoms.

Thank you all again for helping me put everything into perspective. I hopefully won't be posting again.

Gratefully
Amanda

#8 Margaret

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Posted 08 July 2009 - 02:12 PM

<< I hopefully won't be posting again.>>

But, Amanda, you have become our cyber friend. You don't have to stop posting just because you don't have an *official* diagnosis. You have symptoms.......that's good enough for me.

Take care, Everyone.
Margaret

#9 Shelley Ensz

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Posted 09 July 2009 - 03:50 AM

Hi Smanda,

I'm glad your results were apparently okay, at least, by your doctor's opinion. However, I'm sorry that still leaves things up in the air regarding any particular diagnosis.

You don't need to exit stage left from the forums, you know. You could be very helpful in providing support to many others around here who are in a difficult diagnosis situation. That's a very stressful situation and it can drag on for many months or years.

Anyway, more warm hugs for you and remember, we are always here for you!
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.

#10 smanda

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Posted 09 July 2009 - 07:44 AM

Of course Shelley, I don't know why I didn't think of that.

I will follow others' stories and hopefully be able to offer input and advice.

#11 Amanda Thorpe

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Posted 09 July 2009 - 10:50 AM

Hello Smanda

You don't have to leave us if you don't want too. As Shelley said you can still give support and we're still interested in you.

Take care.
Amanda Thorpe
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#12 Snowbird

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Posted 09 July 2009 - 11:24 AM

Hi Smanda

I agree... :o you really don't need to leave/

I think you'll find that you will just keep learning new things here no matter what....and you'll be able to help others too :)
Sending good wishes your way!