Either I have it or I don't
Posted 06 November 2009 - 07:54 AM
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.
Posted 06 November 2009 - 10:53 AM
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,
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Posted 06 November 2009 - 11:32 AM
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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Posted 06 November 2009 - 12:26 PM
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.
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Posted 07 November 2009 - 03:36 PM
Posted 09 November 2009 - 07:09 AM