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yogabear

Telangiectasia

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hi everyone. happy new year and hope you're are doing well.

 

my son (he has itp) is doing just fine. his platelet counts are holding steady at about 60,000.

 

question for you all...i've noticed an explosion of telangiectasia. i used to have to really look for them. as a matter of fact, i only had a couple on my neck/chest. now, they're coming up virtually before my eyes. ok, i may be exaggerating a bit, but it sure does seem like it, lol.

 

anyhow, they're on my chest, neck, thighs, and number two just came up on my hand. and one behind my ear (thanks, jake for pointing it out to me).

 

do you all think that this indicates that my deal is gaining some speed? mr right indes finger continues to feel thick and tight. other than that, nothing else too new.

 

what are your thoughts, please?

 

thanks and hope you're all well,

sharon in washington

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Hey sharon,

Where in washington?

 

I'm not an expert on telangiectasia. I can't even remember the name half the time, so I use another big, fancy medical word: spots.

 

I have the very progressive kind of scleroderma, yet my spots are limited to my forearms, face and chest. They are quite prominent on my forearms, they look like large brown freckles. I guess I share this with you cause I don't have them everywhere and I know there are people out there with significantly more spots, yet are not as progressive.

 

take care, peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi Yoga!

 

I am so relieved that your son is doing okay!

 

Re T-spots - I have had an "outbreak" of them too and you know what? They coincided with some bad news and a lot of stress that I won't bore y'all with (right now :o )

 

You have also been stressed about your son latey haven't you? Maybe that has something to do with it.

 

Mine do tend to come and go - or fade and blend - I have dark-ish skin normally. I have then mostly on my chest but my recent outbreak has been on my face.

 

I sure hope your deal is not gaining speed. I was worried mine was too with a rather big-ish (to me and PFT tech) decrease in my DLCO but doctor didn't seem worried about it so I won't either.

 

Hugs to you!

B


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Great question, and I wish I knew the answer. I tried to research it but only came up with AT. I'll try to remember to ask my Dr.

 

I have them everywhere, but mainly on my face, neck and chest. I got lucky to get one smack dab in the middle of my nose! It's kind of funny...I mean, at least if I get a huge zit they are still going to focus on the red dot.

 

Mine seem darker sometimes, usually if I've had alcohol, which would make sense.

Also, when I am tired or been in the sun it's much worse.

 

I've been going through a series of lasering for mine and so far after six treatments, not much has changed.

 

Mine have never gone away. I just keep getting more. It's hard to describe, but I have bold ones all over, but I also have a ton of faint ones. It's sad.

 

If you find out the answer to whether or not this is a sign of progression, please let us know. I started getting mine a few years after Raynauds started.

 

xoxo,

Tangelo

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hi guys!!

peanut, i'm in bothell, kind of in between seattle and everett.

 

i've noticed that these red dots stay. they are much more noticable when I'm warm (shower or washing my hands). that's how I'm pretty sure that they're vascular. barefut, i do think that these are coinciding with my son's stuff. i've been under a lot of stress lately and these dots are coming out of nowhere. i hope things aren't progressing, but the realistic side of me is saying that they are.

 

ya know, this may sound wierd, but I find these autoimmune disorders fascinating. what are the chances that I would develop itp, only to have my son develop it also? genetics are amazing. sometimes not so great...nevertheless, amazing, huh?

 

you all have a wonderful day and be kind to yourselves. we've all been blessed with at least one more day of life. even with our struggles, we still have each other to talk to and lean on. there are people out there in the world who don't even have that.

 

my daughter said something to me the other day that I found to be pretty profound for a teenager. she said, "Mom, if I were diagnosed with a terminal illness, i don't think that it would get the best of me. i think that it would make me more kind."

 

that's all she said, wouldn't elaborate any more. she didn't need to. i understood completely what she was saying.

 

ok, my friends, take good care!!

 

sharon

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Hi

 

I'm getting quite a few of them lately too, mostly my face, neck, and chest....I think there were a few on my thighs and stomach too but I wasn't 100% sure about those ones? It seems I get news one daily, they just seem to swap places all the time for the most part. I got one smack dab in the middle of my nose too Tangelo! More in my brows as well. I would also be interested to know if it has anything to do with progression....I'll ask my rheumatologist next month as well and see what he says....then we can all compare notes.


Sending good wishes your way!

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I have one on the very end of my nose, two groups one on each side of my nose below my eyes, and a bunch of broken blood vessels. Some days I feel like Rudolph.

 

liliv


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Sharon,

I wish you the best with your son; glad he is doing well right now. I have to tell you; I think your attitude and way of thinking is inspiring!

 

Peanut and everyone,

What color are the T-spots? Peanut, you talk about brown ones and red ones. What color are they?? I have a few reds and a bunch of browns. What's up?

 

xoxo emmie

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Hey Emmie,

I think the red spots are t-spots and the brown ones are hyper pigmentation. I have lots of hyperpigmentation. Along with the large brown freckles on my forearm, I look super tan yet I haven't laid in the sun in years and I totally avoid the sun.

 

spots, spots everywhere... maybe I should play connect the spots.

 

peaniut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi

 

Mine are all red...I have freckles so if I have any brown ones, I think they would blend in anyway so I likely wouldn't notice those ones?

 

Yogabear, I'm really glad your son is doing better too by the way...I have no idea what itp means though?


Sending good wishes your way!

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Peanuts and all,

 

Spots are read, hyperpigmentation is brown. I thought that was the difference. I'm like Snowbird; lots of freckles. When I was a kid, I used to wish they would all grow together so it would look like I had a tan. Between the freckles, age spots and hyperpigmentation, I'm closer to my wish than I would like now!

 

Thanks for the clarification, Peanuts. You play connect the spots. I'm going to get a playmate and play connect the dots to make a box to put your initials in. The person with the most initials is the winner. Remember that one?

 

emmie

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Hey Emmie,

I never did the box thing, but we can compare the pictures we make.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi Everyone,

I always thought that you only got T spots on your hands or face, I never realised that you could get them all over your body!

 

I had them on my hands for awhile, but they have now disappeared. Can they come and go?

 

Best wishes to you all

 

Celia

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Hi Celia, I know that the ones on my hands seem to come and go. They'll stay for a few days and then they're gone. I also have them on the face, those ones don't go and I have alot of veins showing there too. I have many of them on my legs on the inner part closer to the knee and on the top of my feet. My friends rheumatologist told her that when they're on your palms it suggests liver involvment but I've never found that written anywhere.

Hugs, Piper

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Hi everyone

 

Mine also come and go every few days....they just keep popping up....mostly on my face and chest.


Sending good wishes your way!

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