Medical question....scleroderma??????

[maxaroni]

I am in the process of seeing a rheumatologist and have had a battery of tests done. My doctor has a patient portal, so saw the results of the blood work. One thing that was abnormal, was antiscleroderma antibody 70. My level was 2.4 which is elevated, according to the range. I have a doctors appointment 12/19 to see her again and called to speak with her to go over the results of the blood work. A nurse called back stating the doctor will not go over results over the phone and since I have an appointment, she will discuss then.
Lupus and rheumatoid arthritis have been ruled out.

I am freaking out a bit on this one.

 

[anniemae]

Try not to freak. If it was something really really serious, they would have called you in. I don't know anything about scleroderma except that it is autoimmune. I think it is similar to rheumatoid arth and lupus., but I could be wrong. Overactive immune system. Do not worry, and do not google. Your dr. will know what to do and put you on the proper meds if needed. Out of curiosity, what are your symptoms?

 

[maxaroni]

I am trying not to google it. I did read the symptoms and I am not presenting with any symptom other than fatigue. There may be one other but can’t recall as I don’t want to go and look it up again.

As far as why I went to the rheumatologist to begin with, I have deformed fingers from osteoarthritis. My GYN thought it should be check out to see if it was rheumatoid. My PCP ran blood work that was inconclusive before I could get into the Rheumatologist’s office. RA & lupus have been ruled out. She wanted to finish the work up and looking into psoriatic arthritis. The scleroderma test was put into the mix for blood work. I have OA throughout my body, looking into anything else that I have.

 

[MaryLovesPoohBear]

I'm assuming that you are currently having some issues, otherwise he wouldn't have run the test.

With that, I have to tell you, I would google it. Google can be great. Just stick to reputable sites.

Honestly, it is better than being knocked out with what the doctor tells you.

My doctor expects me to google things. And to be knowledgeable about my diseases.

 

[aprilgail]

I would push that Dr apt up and not wait until 12/14- no way would I want to be waiting that long for results of anything. I had a friend that had scleroderma but that was about 20 years ago- no clue what treatment they have now.

 

[Skippy918]

My mom’s friend’s daughter has this and has been battling it since she was a teenager. I don’t know the specifics. There’s some good info at this site. http://www.scleroderma.org/site/PageNavigator/patients_whatis.html#.WhZstXpMGhA

 

[maxaroni]

I am not presenting with any of the usual symptoms of scleroderma. I have recently seen a dermatologist as well. I have no skin issues. The only thing that caught my eye on my blood work was that one thing being elevated. Not sure if there are others “signs” that would be what the diagnosis would be,or if that could be elevated and just be benign. For instance some of my blood tests in the past have had some elevated things but in the scope of everything else, it means nothing and many people have some elevation.

 

[MaryLovesPoohBear]

I am not presenting with any of the usual symptoms of scleroderma. I have recently seen a dermatologist as well. I have no skin issues. The only thing that caught my eye on my blood work was that one thing being elevated. Not sure if there are others “signs” that would be what the diagnosis would be,or if that could be elevated and just be benign. For instance some of my blood tests in the past have had some elevated things but in the scope of everything else, it means nothing and many people have some elevation.

Exactly.

Even with my lupus diagnosis, it wasn't just the blood test results. It was so many other things.

Many auto-immune diseases can only be diagnosed after other things have been eliminated.

 

[arminnie]

I have known several people with scleroderma in the past 40 years. Various parts of the body "harden up". Sometimes it is the skin which can create a facial distortion. But often if affects internal organs. It used to be considered a fatal disease.

But my cousin who is now 76 has had it for years. She's had breast cancer and a heart blockage with a stent (not related to the disease) while having scleroderma. But with today's treatments she's still going strong. Her worst symptoms are that she is always cold especially in her hands even in the heat of summer.

Sharon Monsky (Google her) was the first person I knew with scleroderma. She was a classmate at Stanford. Bob Saget's sister also had the disease, and I think there was a movie/documentary about her. But there has been tremendous progress in the treatment of this disease.

But I don't think you need to jump to any conclusions just yet.

 

[maxaroni]

The first I ever heard of scleroderma was Bob Sagets sister. I think I sort of saw the blood work and a bit taken back. Yes, the antibody is elevated but not off the charts type thing. I am presuming that other factors/symptoms will be factored into the mix and we shall see. I did change my appointment from 12/19 to this coming Tuesday. Not that I think this is an urgent situation, the doctor will only go over results in person and I want to know. It’s my right to know what is going on, if anything.