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Question about Telangiectasaia


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#1 spudnic

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Posted 06 November 2011 - 03:15 PM

I've read that in order for a Scleroderma/CREST diagnosis, the location of Telangiectasia needs to be on the hands or face (i'm guessing that they can also appear other areas of the body, as well). And, of course, the red spots need to be accompanied by other symptoms, since Telangiectasia can occur in otherwise healthy people. My question is: What do they look like when they first appear? Do they first appear pinpoint small then grow larger over time? Or do they just appear one day out of the blue as large as they will ever be? Can they be faint then grow more noticable? Also, do they have to be the round-ish spot type or can they be the linear type? I've looked on this website as well as others and have not found the answers. I'm curious and am hoping those of you who have this symptom can tell me your experience.

Nicole

#2 judyt

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Posted 06 November 2011 - 03:33 PM

Hello Nicole,

I will answer your question as well as Ican from my own experience. My telangectasia on my hands are all about 40years old now. I say on my hands because they are the ones I can see. I believe there are some inside my lower lip but I don't look at those very often :lol: .

As far as I can remember, they appeared suddenly and most of them are 'roundish' and about 1/8" across. But, I have two on fingertips, my right pinky and left ring finger which have become slightly larger and have developed harder skin over the surface. Those ones will blanch out with pressure but not as completely as the smaller soft ones. I have some smaller ones, barely as large as the end of a pin and they seem to have remained the same size always.

I hope this goes some way towards answering your question.

JudyT

#3 annkd

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Posted 07 November 2011 - 09:00 AM

Hi Nicole - I have "T" all over the place. It developed over the years and once it appears it does not go away. I have them on my hands, under my nails, on my lips, nose, chest, abdomen, and arms. I have had to have laser procedures on my lips many many times to stop the bleeding. Yes, they do come back, but in my case, it is a necessity. Some of them hurt a bit. Actually, when they start to develop is when I notice a bit of discomfort. I have a theory (but this is only based on my own personal experience) that when I begin to develop more "T" I go into a flare. I asked my rheumatologist about this and he had never heard this connection but didn't think I was totally nuts! One never knows :). Anyway, that is my experience. Hope it helps. - Ann

#4 Sweet

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Posted 07 November 2011 - 11:31 AM

Hi Nicole,

Yes to all of the above :) I have them on my face, neck, hands, nails, mid section, legs. Some came on over night. Some are small pinpoint little doctors, and some are little dots that look like they exploded. They basically look like a broken blood vessel.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Joelf

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Posted 07 November 2011 - 11:43 AM

Hi Nicole,

Thankfully, I haven't suffered with Telangiectasia personally but I've included a link to a thread we have had on the subject of Telangiectasia which I hope you'll find interesting and which will give you some more information.

:emoticons-group-hug:

Kind regards,

Jo Frowde
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#6 marsha

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Posted 07 November 2011 - 12:28 PM

Ohhh Telangiectasia how I LOATHE you!!

Nicole I have a bit of a different take, I have them on my face, inside my mouth my cheeks, neck, chest and hands. The ones on my hands and finger come on fast, but they also at times go away. ( I asked my doctor about this and he says they can come and go.) They are never big, pinpoints mostly.

The ones on my face are more like spider webs. My face looks horrendous, I hate it, my friends say it just looks like I have a sunburn, I disagree!! If you get up close they are webby looking onto my neck and upper chest.. I haven't noticed them anywhere but these places. I like to refer to them as the "UGLY" part of my illness. You should use the medical section on this site it is VERY helpful.

Good luck,

Marsha

#7 spudnic

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Posted 07 November 2011 - 05:00 PM

Thank you! I did read the thread you linked to, Jo, as well as the main telangiectasia page. I'm just wondering about what I see on my own skin. I seem to be getting little pinpricks of red on my inner lip, the top of my hands, one on my palm, and several on both upper arms and on my torso. Have not seen any on my legs, although I am getting a few of the spidery veins (not spots). I'm also getting a few of the linear type around my nose. I don't have any spots that are as large as the pictures I've seen when googling telengiectasia, which is why I asked if they got bigger over time.

Anyhow, thanks again for all your replies. I'm going to keep track of the little spots and lines and see if they change or not.

Nicole

#8 Shelley Ensz

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Posted 07 November 2011 - 07:03 PM

Hi Nicole,

Please keep in mind that, by themselves, telangiectasia are nothing at all to worry about. They are very common, even on the hands and face, especially due to sun exposure and menopause. Usually they are managed by being completely ignored. Sometimes they become a cosmetic issue that people choose to cover with make up or with the help of dermatologists.

It is only when they occur along with other significant symptoms of scleroderma that they can then be considered as part of the diagnostic process; and even then, it is only spots on the hands and face that "count" towards a diagnosis.
Warm Hugs,

Shelley Ensz
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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.

#9 spudnic

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Posted 07 November 2011 - 08:22 PM

Shelley,

Yup, I do know they are common; in fact my mom has quite a few of the linear kind on her nose and cheeks. Plus varicose and spider veins run in my family. The few that I have are new and tiny at that...nothing to worry about cosmetically speaking. In combo with the Raynauds and sore finger joints (new as well).... I'm just keeping an eye on it all till I can afford to go to a doctor. I was just curious about how they "showed up" for people. :)