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Connective Tissue Diseases

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#1 Clementine


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Posted 23 September 2008 - 02:04 AM

Hello Everyone,

I have been having knee pain for what seems like forever. It's gotten worse, to where now I have a small lump on the back of my knee and the pain radiates down the calf.
I'll get an MRI soon but the Dr is pretty sure it is something to do with the menisci.
How do we know that these type of things are scleroderma related? I just wonder if I need to have my ortho Dr. talk to my rheumatologist.
Of course, I will have them speak if I end up having to have arthroscopic surgery. If it's sclero related (because the meniscus is cartilage, and cartilage is connective tissue) does it even matter or is it important to inform my rheumatologist? I just don't want to bother him if it's no big deal. He has people dying, and I'm calling about a knee issue?? :lol:

I'm also concerned about having arthroscopic surgery. I'd have to have an epidural.
I'd hate to get an infection and wonder if it's worth the risk.


#2 Shelley Ensz

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Posted 23 September 2008 - 03:09 PM

Hi Clementine,

I'm sorry you've been having such knee pain and that it is getting worse. As it happens, I don't know anything about the menisci; never heard of it before. It sounds like a good name for a science club for mensa members though. :blink:

I think doctors/rheumatologists figure out if it is sclero related by ruling out all normal, everyday causes first. We can all get absolutely anything a "normal" person can get, right smack dab on top of scleroderma, of course. It is "bad" to have everything just assumed to be scleroderma by our doctors, instead of investigating the simple things first, because that often bypasses readily available treatments for the condition or gives a false impression of the illness spreading more rapidly than it is.

You could read up on scleroderma skeletal involvement and then discuss your research with your medical team. The rheumatologist should have a gander at it, and the proposed surgery, in case they have concerns...like, whether or not it is scleroderma causing the problem (such as fibrosis or tendonitis) as well as their input regarding surgical concerns and treatments.

I would think, if your rheumatologist is any good at all, they shouldn't have people dying on them all the time :huh: and one way to help avoid that is for them to provide decent input on health issues. Plus, the ortho doctor can always consult your rheumatologist, too and that might be quicker/easier than you having to make a separate appointment.

Let us know how it all develops and turns out. 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.

#3 canon


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Posted 23 September 2008 - 03:27 PM


With new painful symptoms or an old painful symptom that gets worse I believe warrants at least a phone call to one of your doctors. I think the problem is we don't know which one to call because we don't like bothering the rheumatologist but deep down we think they know the most of what is going on. If the rheumatologist knows about the knee pain then I would call and ask the office if what you have growing behind your knee and causing pain in your calf is something you need to make an appointment for or should you see the orthopedic doctor. I too have a terrible time trying to make those decisions. We don't want to be pesty but this disease is very pesty and painful. Who can keep up with it? There always seems to be something new or something is getting worse. How to draw the line I can't say. I just know pain is not normal. If what we try at home doesn't work we either live with it and not do well or get it checked out for peace of mind sake. Most of us are already on pain medications either nsaids, prednisone or immun-suppressants or outright pain meds and some kind of pain breaks through anyway. My gut says call. It is not like I'm calling everyday or every week or every month. This disease cripples, kills and disables people and we have it. What have they learned about this disease and what are they still learning about it? Any autoimmune disease is still in question. I don't think we are even close to being neurotic.

We tend to doubt ourselves alot at times and we really shouldn't.

Go with your gut.

A happy heart is good medicine.

#4 janey


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Posted 23 September 2008 - 03:27 PM

Hey Girl,
It turns out that a painful and swollen knee was my first symptom. The pain started months before any other symptoms, then the swelling. It looked like I had a baseball on the side of my knee. I went through the MRI and basic exams with everything coming back negative. My ortho didn't even see any sign of osteoarthritis. After about 8 months it all went away. Of course by then, many other symptoms had sprung up.

BTW - my hubby had arthroscopic surgery in his knee and he didn't have to have an epidural. They just used a mild anesthetic and he didn't feel a thing and was in and out in half a day.

As Shelley, please talk to your doctor about it. It's not something to be ignored Darlin'

Big Hugs
Janey Willis
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International Scleroderma Network (ISN)

#5 Clementine


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Posted 24 September 2008 - 02:02 PM

Thank you friends! We'll see what's going on with the knee next week. I had an MR today. I was so afraid it was going to pull out my new dental implants!