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Chopper

and yet another question....

8 posts in this topic

Are you tired of my questions yet?! "Inquiring minds want to know!" :VeryHappy: Last night as I was sitting in a meeting, I was looking at my freckled arms, and amongst the freckles I saw that more telangiectasias had popped up. It made me glad I have freckles to camoflage the red spots! So at bedtime I started reading more (here) on them and got somewhat freaked out that they can be connected to the presence of pulmonary hypertension. Mine are quite scattered - outside lips, nose and cheeks, chest, stomach, arms & hands. I don't see the specialist until the end of June, but I'm going to go to a new family doctor (internist) in a couple weeks. So is this something I should ask about or do I wait for symptoms to ask about it? Should I ask the family doctor or wait to ask the specialist? What does having that feel like?

 

Chopper


Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

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Hi Chopper,

 

Please don't worry about asking questions.....an enquiring mind for Sclero knowledge is a good thing!! ;) :)

 

Thankfully I haven't noticed any Telangiectasia on my skin, so can't advise from my own experience. However, I do have a friend with quite a few of them on her face and arms and she (to date!) doesn't have PH. Although it's quite true that they can be an indicator for PH, they can also be a marker of oesophageal involvement, decreased DLCO, and heart involvement, but that doesn't necessarily mean that you will develop all these complications.

 

I would probably wait to ask your specialist about the Telangiectasia when you have your consultation, mainly because it's possible that your new family doctor may not be able to give you much advice about them.

 

Here's a :emoticons-group-hug: to comfort you as you've been feeling worried. :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Chopper,

 

I have a few teleangiectasia on my face and hands, not many at all, really. I do have PH, esophageal involvement, and decreased DLCO. I think it's probably a question for your specialist. Your internist will probably give you 'that look', if you know what I mean. :)

 

I always take these predictors with a healthy pinch of salt. There are far too many 'sometimes' in there, both proving and disproving the predictive value. (When I hear the words 'predictor' and 'prognosis', I always think of poor old Punxsutawney Phil and how reliable his weather guesses are...)


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Yes Chopper, do keep asking!

 

Again, I've learned something new! That's what is so great about this site, all the factual knowledge from everybody in the true know.


Sending good wishes your way!

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Hi Chopper....No of course we are not tired of the questions because we all have them!!!

 

I have had high blood pressure for a good number of years and treated with medication LONG before I was diagnosed 3yrs ago.

 

I have teleangiectasia on my arms to just below my elbows and a few scattered patches on my legs my face not so much as you would notice, I have had them for a number of years 2 at the most but, I have had yearly heart and lung scans and I have no involvement in the PH or lung department as yet. So, I would not immediately get into a panic!! But please point them out to your rheumotologist when you see them and let them decide what is the best action to take for your care, as we all know that no two of us suffer or present in the same way. Its always best to ask their advice in these matters.

 

keep posting and asking your questions ok

hugs always

Lynn

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Jeannie, I'm all to familiar with Punxy Phil - he's not that far away from us! Unfortunately we've never gone for the festivities. It's always during tax season and we're not allowed vacation then. So I watch him on the news like most people! And your analogy fits perfect!


Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

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Thank you for the replies! I'm glad to read it's not a definite marker. When I met my rheumatologist in March, I had 2 red spots on my forearm, but I had no clue about them, so I didn't even mention them. Then when she called me a week later with the blood test results, I noticed one on my lip. When I started reading things here, I realized they must be telangiectasia. Since then I think I've got a new one or two every day! I will take the advice not to panic!

 

You know what else I wonder, people with telangiectasia can have watermelon stomach in the antral part. I wonder if the antral gastritis I have is the beginning of watermelon stomach developing, or if it's related to the gastroparesis or celiac. I may never know, but at least I know that its possible to develop it.

 

Chopper


Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

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Hi Chopper,

 

I have them scattered throughout my body as well. I don't have PH yet, hopefully never will. BUT I think there is a lot to be said for peace of mind. I think it would make YOU feel better to at ask the question, so my advice is go for it. :emoticons-group-hug:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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