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#1 Weasel

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Posted 11 March 2010 - 01:57 PM

Hi,
I found this forum while researching false positives on the positive ANA/SCL-70.
That's what happened to me.I've seen a doctor a few times and each time I get a higher value on the SCL-70 test.
He says he doesn't think that I have Scleroderma but can't say I don't have it. I have some symptoms like kidney problems, Heart problems, Heartburn, fatigue and a generalized skin rash but no ulcers on fingers nor do my fingers turn blue.They get very painful at times and are very sensitive to the cold and turn a dark red color.I have ulcers on my tongue and they hurt when I eat.
So I have this and that and I am beginning to feel like a Hypochondriac because something is wrong with me and I don't know what.
I am hoping to become more educated on this and to meet others like myself.

#2 janey

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Posted 11 March 2010 - 02:12 PM

Weasel,

Welcome to the Sclero Forums! I'm sorry that you are having so many problems and haven't been able to get a definitive diagnosis. That was the most frustrating part for me, not knowing what was going on and having doctors that really didn't know what was going on. As you probably have already heard, Scleroderma is a very difficult disease to diagnosis. There are so many variations and no two scleroderma patients are alike. One of the many, many pages we have on this site discusses the difficult diagnosis of scleroderma. It might be a good place for you right now.

I'm glad to see that you are willing to educate yourself on your symptoms and possibilities of what might be causing them. You really need to be your own advocate and stay on top of things. Doctors see hundreds of patients a week, so it's very difficult for them to differentiate at times. That's from my experience at least.

I hope you get some answers from this site as well as from your doctors. Please keep us informed as to how you are doing. We're here to help.
Janey Willis
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#3 Amanda Thorpe

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Posted 12 March 2010 - 09:23 AM

Hello Weasel

Welcome to the forum! Have you considered seeing a scleroderma specialist to try and get a definitive dianosis or not as the case may be?

Clearly not having a diagnosis is frustrating and many people who eventually got a sclero diagnosis know that frustration well. Janey's absolutely right you have to be persistent and determined, you know something is wrong and it's only a matter of time before someone else does too.

I hope this helps and take care.
Amanda Thorpe
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#4 Sweet

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Posted 12 March 2010 - 10:22 AM

Hi Weasel,

Welcome to the Sclero Forums. I'm so very glad you've joined us. Scleroderma can be a tough one to figure out. The link Janey gave you will be very helpful, in addition to the link Amanda gave you for a specialist. I'd like to give you one more on What is Scleroderma which covers a lot of different symptoms, so you can see where you fit in.

Keep us posted and again, welcome! :flowers:
Warm and gentle hugs,

Pamela
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#5 Weasel

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Posted 12 March 2010 - 03:48 PM

hi again and thanks for all the replies.
I am currently seeing a Rheumatologist and he seems rather puzzled by it all. He says that I have some symptoms- but not the typical ones,like thick,stiff skin.
In the meantime I am keeping active, as much as I can, I get on the treadmill several times a week and walk if nothing else because I think it's good to keep your circulation going, no matter if you are healthy or have an illness. I try to keep positive and think good thoughts.
I started getting a weird bump on my middle thumb joint, it is kind of painful when I try to straighten the thumb. It looks like rheumatoid arthritis.
I will be making another appointment with the Rheumatologist this month and I have to see my kidney specialist to check up on that one. Have been very tired,it's been difficult to keep on task with stuff.
I'll be checking the links you provided and THANK YOU and a pleasure to meet everyone!
I'll keep you posted on what happens and let you know a little more about me .
Hella