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MRI and SCLERO


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#1 piperpetpete

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Posted 11 August 2009 - 12:00 PM

Hey guys,

While I continue to wait on any diagnosis I have a question for you. Since I have the marker SCL70 but only knee symptoms, I am still unsure of where I fit with all this. All my baselines came back normal, but the pain behind my knees and swelling on the inside part is NOT going away. The MRI on my right knee indicates a minor sprain of my MCL. Other than some degenerative issues there too, which I already knew about, I am wondering if the MRI'S can show problems like connective tissue issues. My second rheumatologist said "there is NO sclero in knees" sigh........ I am having an MRI of the left one soon.... Ligaments are connective tissue, right? Any thoughts on this would be appreciated!!

Carol

#2 piperpetpete

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Posted 12 August 2009 - 02:51 AM

Still hoping someone has any idea about the MRI and sclero. I read somewhere that doctors could see indications but wanted any of you that may have experienced going through a MRI.

#3 Shelley Ensz

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Posted 12 August 2009 - 05:21 AM

Hi Carol,

Please keep in mind I have no medical training and couldn't even change the tire on an ambulance and that I may be wrong; I often am! Just ask anyone who knows me, they'll verify that. :P

It strikes me as a bit odd that they even ran an Scl-70 in the absence of scleroderma symptoms. They would certainly be unable to diagnose scleroderma based only on an MRI of the knees; at least, I've never heard of that happening, so far.

There needs to be a combination of diagnostic criteria, like tight skin, pulmonary fibrosis, Raynaud's, etc. See our Systemic Scleroderma Symptoms Checklist, which I am copying here from our brochure, What in the World is Scleroderma?

Systemic Scleroderma Symptoms

Please consult your doctor if you have two or more of the following symptoms, which are sometimes due to systemic sclerosis (scleroderma). Systemic scleroderma may disqualify a person for life and/or health insurance in some countries. Sometimes certain lab work or biopsy results may force an unwelcome diagnosis into the medical record.

Circulation
 Swelling of hands, feet and/or face
 Raynaud’s: fingers and/or toes turn white or blue due to cold or stress
 Ulcers (sores) on fingertips or toesGastrointestinal
 Difficulty swallowing
 Heartburn (reflux)
 Constipation, diarrhea, irritable bowel syndrome

Heart, Lungs, Kidneys
 Shortness of breath
 Pulmonary (lung) fibrosis
 Aspiration pneumonia
 Pulmonary hypertension
 High blood pressure or kidney (renal) failure
 Right-sided heart failure

Muscles & Tendons
 Tendonitis, or carpal tunnel syndrome
 Muscle aches, weakness, joint pain

Excessive Dryness or Sjogren’s Syndrome
 Excessive dryness of the mucus membranes (such as eyes, mouth, vagina), which is sometimes called Sjogren’s Syndrome

Skin
 Tight skin, often on hands or face
 Calcinosis (calcium deposits)
 Telangiectasia (red dots on the hands or face)
 Mouth becomes smaller, lips develop deep grooves, eating and dental care become difficult

Many of these symptoms can occur by themselves or can be due to other things.

Symptoms such as heartburn, high blood pressure, constipation and muscle aches are common in the general population. More unusual symptoms, such as pulmonary fibrosis or tight skin, may be more likely to lead to a diagnosis of systemic scleroderma.

**

Yes, ligaments are connective tissue but then again, just about everything in the body is connective tissue, including bone, blood, skin, and cartilage. So there are kazillions of illnesses that involve the connective tissue without meaning it is scleroderma. It's curious to me that they ran an Scl-70 test for a sprained knee. Unless maybe they do that all the time? (I don't know!) So I'm suspecting, maybe you have other symptoms that caused them to run more in depth tests? Sorry if you've written it already and I've forgotten. Some days I have a Swiss cheese memory. :blink:
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.

#4 Jeannie McClelland

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Posted 12 August 2009 - 05:33 AM

Hi Carol,

We've had several articles go through the Newsroom about the use of MRI in diagnosing and evaluating the effects of scleroderma on various organ systems and also (of more interest to you) joint/muscle involvement. The article that came immediately to mind was this one:

Magnetic Resonance Imaging of Hand in Systemic Sclerosis (SSc). The visualization of pathology of hands was better with MRI and detailed lesions which were difficult to interpretate with clinical investigation or not visible with X-ray. M. N. Starovoytova. SAT0240 EULAR 2006. (Also see: Medical Tests)

So, I guess the short answer is yes, MRI can demonstrate soft tissue 'issues'. It's really important, though, to remember that most diagnoses are based on clinical evidence as well as any test results. There is a list of major and minor criteria that we are expected to satisfy.

As I understand it, you can have the SCL-70 marker and NOT have anything more than a 'pre-disposition' to the scleroderma spectrum. You can also have confirmed scleroderma and NOT have the SCL-70 marker (I fall in that group). I don't think they like to diagnose scleroderma only on the basis of an antibody turning up positive.

My rheumatologist sometimes needs to remind me that I can't blame everything on scleroderma, as tempting as that is. :D

Good luck with your knees! I hope the problem is something that some physical therapy can resolve.

Warm hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
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International Scleroderma Network

#5 janey

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Posted 12 August 2009 - 05:45 AM

Carol,
Jeannie and Shelley have provided some great information so I'll only add a couple of comments about my initial knee problem and MRI. In the fall of 2002 my left knee began to swell and pretty soon I had a knee that looked like a lope-sided softball. It hurt like the dickens. They did an MRI but the orthopedic doctor said I might have a little osteoarthritis, but other than that she didn't see any reason for the swelling and pain. So I continued to take my arthritis pain pill to ease the pain. After that many more symptoms which turned out to be directly related to sclero started (e.g., Raynaud's, swallowing problems). In August 2003 I was diagnosed with sclero. By then my knee felt great and there was no swelling. No doctor has ever associated the initial knee problem with sclero. Sometimes at night my left knee, hip and muscles wake me up with sharp pains, but again - my rheumatologist just shrugs his shoulders.

So the moral to this story is - that sometimes there is not rhyme or reason to some of the things that happen to our bodies. Just stay being aware of how you feel. Don't worry about your SCL-70 marker. As Jeannie says - it's not a sure thing. Celebrate that all your baselines are normal and live a long and joyous life (a personal goal of mine!)

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
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International Scleroderma Network (ISN)

#6 piperpetpete

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Posted 12 August 2009 - 01:53 PM

Thanks guys, for your thoughts on this. They ran the ANA and more as my ANA was positive. However I've had ocular myasthenia gravis for 20 years and its not been that big of a deal. The other reason they ran the complete panel was a three day pain and burning episode behind my knees and, at its worse, up my arms and down my back for three days. Then a several day period of wet noodle fatigue. It has pretty much stayed in my knees since then but just won't go away....two of the rheumies said too it wasn't enough to diagnose as sclero. I guess I'm just kind of stuck for right now and looking for answers. I am thinking its just gonna have to play itself out and as you guys said, either go away or will have other symptoms that arise later. After completing the baselines, with no changes, I guess it is just wait and see. I have a three month checkup with the rheumatologist and another chest xray in 7 months. I will just keep my appointments and see what develops.

Thanks for the advice, guys!

Carol

#7 Shelley Ensz

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Posted 12 August 2009 - 03:38 PM

Waiting is so hard, isn't it, especially when you're just waiting for the other shoe to drop. Maybe. Someday. Or not. I do know what that's like, and so do many others on here. This is going to sound trite beyond belief, but it would be a terrific time to take up a new hobby that you can immerse yourself in. Maybe something you've always wanted to do but never made the time for. Of course, something that wouldn't stress your eyes or your knees too much.

It helps the time go by faster and then there are no regrets if it turns out that there wasn't anything to be terribly worried about, in the first place. And if it is something worse, you have a new interest under your belt to take pride in and to help you cope better, at that time.

Do you have any ideas for special interests to develop? Or am I the only cashew in the chow mein that finds this approach helpful? :blink:
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.

#8 piperpetpete

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Posted 13 August 2009 - 03:02 AM

Not at all, Shelley!!! I do volunteer at our local animal shelter and at this very moment, am fostering a golden retriever. We already have two others, so they are having a blast with the addition for a week or so:)) I do realize this could be a long process and am starting to relax, somewhat. Still being able to swim is so important to me, even if I can't run or cycle right now.

Wanting to find answers, fix and move on has always been the way I tackle things. It's time for some readjusting I realize. Thanks so much for your support!

Carol