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Either I have it or I don't


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#1 madrigal11

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Posted 06 November 2009 - 07:54 AM

So here's my story. I know it is similiar to other's in here which is actually reassuring. I tested positive for SCL-70 when I got Parvo (that was the trigger for the tests, severe joint pain in every joint) about 4 years ago. Now, I go back about every 3 months to be retested, same, same. Then once per year I do the CT of chest and Echo of heart. So far, no problems. So what's my problem? Well, as far as I am concerned, I don't have the disease. Yeah, I have severe fatigue and some aches on occasion, but I hardly think that qualifies as symptomatic. Yet, every time something else is wrong with me, another doctor will say, well it could be related to Scleroderma. But when I go to my rheumatologist, he says, no, I don't think so, you don't really have any symptoms.

Okay, so either I have it or I don't. And if I don't, can I have someone take my other issues seriously and separately? The surgeon basically didn't listen to a word I said when we were talking about the problem with my lymph nodes, and so now, I still have no idea if I should go ahead with the biopsy, or keep waiting. To add to that, the CT also found that I have a subserosal uterine fibroid, which the surgeon didn't even mention to me (good thing I looked at the report myself, since this is the first I've heard of it). I feel totally lost and a lot stressed.

Jenni

#2 Jeannie McClelland

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Posted 06 November 2009 - 10:53 AM

Hi Madrigal,

As you so rightly say, a positive Scl-70 blood test and aches and pains aren't enough to 'earn' you a diagnosis of scleroderma. Have you thought of getting a copy of your records from the rheumatologist? It should have his impressions and very probably a statement along the lines of 'although positive to Scl-70 testing, this patient shows no clinical symptoms of scleroderma and it is my impression that she is unlikely to develop it." Or you could ask for a letter from him stating something along those lines. Then you can hand it to other doctors who are inclined to attribute every symptom to scleroderma.

If you feel, yourself, that a biopsy is warranted, you can press for one and if the doctor declines, ask for the reason.

Best of luck,
Jeannie McClelland
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#3 Amanda Thorpe

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Posted 06 November 2009 - 11:32 AM

Hello Jenni

Welcome to the forum! Wanting to know where you stand regarding a scleroderma diagnosis is perfectly understandable and I would go with Jeannie's suggestion. With your confirmation in hand that you do not have and are unlikely to have a sclero diagnosis you challenge the doctors who are trying to attribute some of your symptoms to scleroderma, then hopefully you can find out who the real culprit is.

Do let us know how you get on and take care.
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#4 Shelley Ensz

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Posted 06 November 2009 - 12:26 PM

Hi Jenni,

I agree, you'll need to get it documented that you don't have scleroderma so that you can force them to look elsewhere for answers. The surgeon might not have mentioned the fibroid because they are extremely common in women. I think something like 80% of us have them before we are 50. They don't do anything about them unless they are causing symptoms, especially on the smaller ones. Subserosal means that the fibroid is outside the uterus, not inside, so of course less opportunity for it to create problems.

The thing with the imaging studies they can do nowadays is that they can see far more things than they could years ago, so it seems nearly every test will show up some sort of abnormality. But, many of the abnormalities are actually quite common to the point where it is almost abnormal if you don't have them (such as fibroids, not having any by age 50 would actually be a bit strange, only a 20% chance of that.) So you could look at it that the fibroid actually puts you in the 'normal' category. Unless, of course, you have specific symptoms that it could be causing.

If you have a large one (the report should show that), it could press upon your bladder, bowels, or back, and cause some issues. In that case, you'd want to have another chat with the surgeon, eh?

I'm sorry you're experiencing all this confusion with your medical team. I know what it's like when they're barking up the wrong tree, and it's very frustrating when we realize it before they do. In those cases, I always comfort myself with the thought that, "The truth will come out in the end." Of course, on occasion, I've had concerns that the truth would only emerge by autopsy <sigh> but eventually, the symptoms and medical tests and analysis will come up with something solid that is convincing -- to both us and our medical team.

Until then, yipes, you just need to keep advocating for yourself.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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The most important thing in the world to know about scleroderma is sclero.org.

#5 madrigal11

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Posted 07 November 2009 - 03:36 PM

Thanks for all the thoughtful replies. I feel better just hearing from all of you. I have decided to biopsy the lymph nodes to ease my mind if nothing else. As for the fibroid...I wonder if it could be causing my hip pain? Anyway, I will talk to my GYN and follow up.

#6 ladybug

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Posted 09 November 2009 - 07:09 AM

I too tested positive for SCL-70, over a year and a half ago, but my rheumatologist said I do not have Scleroderma and he doesn't think I will get it. I still worry though. I went to dermatologist last week for a skin check and he said I had no signs of it and added that the blood tests are not good indicators of disease. I have had several different doctors tell me that the autoimmune blood tests are not very diagnostic and the scl-70, in particular, is often wrong. I hope they are right.