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Please Help!

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6 replies to this topic

#1 summer


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Posted 17 February 2007 - 01:37 PM

Hi Everyone,
A few of you might remember me from my last post. I am new to this forum and not yet been diagosed as having Scleroderma officially. I am due to see my rheumatologist in 1 weeks time. If you all remember I had an ANA blood test done and it was reported to have an Antibody titre > 1600 and the Pattern: Centromere
The comment states: This pattern and titre is highly suggestive of localized Scleroderma of the CREST variant or in patients with isolated Raynauds phenomena.
Could someone please explain if they know the following:
1. What does titre mean?
2. What does Centromere mean?
3. Is there a localized Scleroderma of the Crest Variant , I thought there was only Diffused and limited but not localized of the Crest?
Maybe I am not reading the report correctly. I think it was Heidi that mentioned in my last post that she thought I might have cRest.
I have been having a twitch in my left eye for a few days which is annoying it is on top of my eyelash in the corner. Could this be related to Scleroderma?

Many thanks
CEd :

#2 Heidi


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Posted 17 February 2007 - 01:58 PM


CREST is considered one of the systemic variants of scleroderma, not localized. I have never seen CREST considered as a localized subtype in any of my reading.

You asked about the ANA and centromere pattern. Here is a link from our Sclero A to Z web page that has a whole lot of information about ANA. There is some great information here and I think reading through some of the articles will give you a better understanding of ANA and what exactly is being measured. When I looked through the article I found that the anticentromere pattern is typically associated with limited Scleroderma (not localized). Here is the link again that talks about types of scleroderma and the difference between limited, diffuse, and CREST.

I do hope you will read this information and it will help answer your questions.

Warm wishes,

#3 janey


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Posted 17 February 2007 - 06:36 PM

Heidi has provided a great page with lots of information on antibodies, ANA, etc. If you go to Anticentromere (ACA) it might help explain the centromere.

I, too only know of CREST as being a form of systemic, not localized. But you don't have to have all of CREST. Maybe just cRest as Heidi mentioned.

A high titre means that a high concentration of a substance has been detected.

I get a twitch in my eye but I've had it for years, primarily when I get really anxious about something. I've never really related it to sclero.

Hope this helps,

Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 bookworm


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Posted 17 February 2007 - 07:44 PM

Hi Ced!

I have CREST -- systemic limited. I don't have much to add to what Heidi and Janey said. I did want to say that I also get an eye twitch from time to time and associate it with anxiety, not scleroderma.

Do all the reading you can, then make a list of questions you want to ask your rheumatologist next week.

Good luck!

Mary in Texas

#5 barefut


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Posted 18 February 2007 - 05:29 AM

I agree with Mari about focusing (and writing down!) all the weird symptoms you've been having, even if they seem just too strange to mention, don't be afraid to mention them.

I went in to my first rheumatologist visit with a page long list of every big and little thing, even if I thought it had nothing to do with sclero. AND even if it wasn't a particularly bothersome thing. I'm glad I did. Your rheumatologist will read it all and pick out what's important to pursue and what isn't.

I've taken a list of new and worswening symptoms to her at my visits ever since and she appreciates it and understands the need to write things down. She always asks to keep the list.

At my last visit I added muscle cramps and twitches to my list at the last minute, which weren't particularly bothersome but thought I'd add it. She said they are a symptom of low potassium. I didn't know that. Turned out my potassium was ok. But I'm glad I mentioned it because now I've learned something.

Welcome to the site and good luck with your appointment. Try not to stress too much. (my eye twitches under stress too) Keep us posted.

#6 summer


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Posted 18 February 2007 - 01:26 PM

Thank you all for responding. I will let you all know how I get on
at my rheumatologist visit.
Many thanks

#7 Shelley Ensz

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Posted 18 February 2007 - 02:10 PM


Good luck at your rheumatologist appointment. Let us know how it goes!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.