Rejected by Hubby's Rheumatologist...
Posted 19 August 2011 - 08:18 PM
I was hoping he could perhaps look at some of my symptoms that to me seem to match more scleroderma than what I've already been diagnosed with: Sjogren's, and confirm if they're of concern (my ANA was nucleolar, so that's the only reason I even know about scleroderma), but I guess not.
I do have a rheumatologist, it's just that when I showed him some new developments on the symptom front in April, he didn'thave anything to say or do about them. But I have a few more that have cropped up, so I've made another appointment in a couple of weeks to see what he thinks.
I suppose it doesn't really matter what I'm diagnosed with, I just hoped that if it was scleroderma and I could go to this specialist, maybe there would be some course of treatment, or perhaps even just some validation for what I've been experiencing.
I don't even really know what I'm expecting. Fortunately I don't have anything that would be considered terribly serious (i.e. lungs or heart, etc), so I'm starting to think for the less serious issues, there won't/can't really be anything done.
Sorry for the rant. Just felt like getting it out. Thanks for reading if you made it this far.
Posted 20 August 2011 - 01:14 AM
How disappointing for you; I'm so sorry.
The only thing I would say is that even though you haven't tested positive for the autoantibodies that doesn't mean to say that you haven't got Scleroderma, as a number of our other members can testify. Is there perhaps another Scleroderma specialist you could consult, if you feel that your present rheumatologist isn't giving you much help or support? Even though you're not at present experiencing any problems with your heart and lungs, you still want to feel confident that you're getting the best treatment available.
I do hope that your present rheumatologist can help you with your unexplained symptoms on your next appointment and that you soon feel better.
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Posted 20 August 2011 - 08:20 AM
Yes, I definitely am aware that it is possible to have an autoimmune disease without the specific antibodies (although I have read, which is comforting, that if someone is negative for the specific antibodies, it often means the course of the disease isn't as severe). And I definitely have Sjogren's (lip biopsy was positive), but don't test positive for the SS-A or SS-B antibodies, either.
I think I'll stay with my present rheumatologist, because my husband's rheumatologist said that mine sends all the scleroderma patients to him. So mine obviously can recognize scleroderma; I guess he just hasn't seen any symptoms that are specific to scleroderma.
And obviously I'm no doctor, but I have a shiny patch of skin on my chest, and my mouth seems tighter than it used to be. At the back, where the bottom jaw meets the top jaw, I now have some sort of "membrane", like we have under our tongues. This is a new thing, and to me, I don't think that's a Sjogren's thing. But I guess I'll see what my rheumatologist says, since I was able to get an appointment for a couple of weeks from now (a cancellation).
Thanks for responding!
Posted 20 August 2011 - 09:51 AM
I have to add my personal experience to the statement:
that if someone is negative for the specific antibodies, it often means the course of the disease isn't as severe.
I have a negative ANA and SCL-70 and was told by the rheumatologist I won't see again that this meant I was unlikely to ever develop internal organ involvement. Of course I also trumpeted this good news to all and sundry.
Well imagine the surprise at finding myself in serious heart failure in 2010 as a result of myocardial fibrosis, I then also developed gastrointestinal involvement. My experience is that serious internal organ involvement can indeed develop regardless of having a negative ANA/SCL-70.
The reason I am saying this is because I think the rheumatologist I won't see again took their eye off the ball thinking I was unlikely to develop internal organ involvement but boy did I! By the time the fibrosis was discovered it had already become inactive so it couldn't even be treated, the only thing they could do was address the resulting heart failure with a pacemaker/defibrillator.
Amberjoile please let me clarify that this obviously doesn't mean you're going to develop anything more than you already have. You could always say to your husband's rheumatologist that there's a woman living in the UK with negative SCL-70 but she has diffuse scleroderma with myocardial fibrosis and gastrointestinal involvement and is being treated by a centre of excellence...please explain...! If your husband's rheumatologist looked at my blood work alone he wouldn't see me either!
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Posted 20 August 2011 - 05:12 PM
I'm sorry to hear about all the issues you've been facing! I guess I can't rely on the negative bloodwork after all, but as you've said, it doesn't mean I will get serious issues. It just doesn't mean I won't. And technically, there's been no confirmation I even have scleroderma, so I'll just have to see what my rheumatologist says at my next appointment.
Posted 20 August 2011 - 10:48 PM
I'm sorry you didn't get to see the new rheumatologist you were so excited about. May I give you a warm, comforting hug?
As you've discovered, some scleroderma centers or rheumatologists just don't accept patients who have not already been diagnosed with scleroderma or who meet certain criteria ahead of time. I think it happens particularly if the practice is already overwhelmed, and also in instances where the doctors feel comfortable treating people who have already been diagnosed, but they don't feel entirely confident in their own ability to diagnose.
I have also heard other reports of rheumatologists who just won't see people who don't already have positive antibodies.. I would say just in general these would be excellent doctors to avoid because with scleroderma, the constellation of symptoms are what is supposed to be used for any diagnosis, and not the blood work. It is possible for healthy people to have positive antibodies, and for people with scleroderma to get a clean bill of health when only the antibodies are looked at, and especially earlier on in the disease process.
It is also possible for labs to make mistakes! In fact 20% of all lab tests are erroneous, which is a reason none of us should ever get upset over any lab test until it is successfully repeated.
I'm sorry you suffered a disappointment. I sure do know how that can be, and more than once I've had my hopes up over something, only to have them dashed. While I was going through the most difficult part of my diagnosis, I just kept telling myself that nothing mattered because the truth would come out in the end. All I cared about was the truth, no matter what it was. The facts just don't lie and eventually they add up to enough truth that everyone, patient and doctors alike, would be in agreement.
The truth might be that you have "only" Sjogren's (but that is an awful lot of an "only" to have!) or it might be you have Sjogren's secondary to another disease. That does happen. And sometimes it happens that we suspect things, or something else seems to be developing, but then it doesn't. So, just hang in there, okay?
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Posted 21 August 2011 - 12:50 PM