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Scarring tissue


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#1 lazychain

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Posted 29 December 2011 - 03:58 PM

Hi everyone, I am a new member of the Sclero.org forum.

I was diagnosed with Scleroderma last year. My present condition is that I am being monitored by a Rhematologist every 6 months. At this moment I have severe Raynauds and have to wear battery operated gloves a lot. Also there is hard skin on the index finger of my right hand. I have had the usual tests like scanning over my body, breathing tests etc. I am finding I have a dry mouth condition which my rhematologist said to treat with saliva pills and for my dry eyes I have liquatears.

The Gastroenterologist has told me there is a place near my liver which appears to be scar tissue and not to worry about it. I have tried not to worry but this tissue seems to have grown because I have a noticeable lump at the top of my ribs and it is really beginning to hurt. If I have hard skin coming on my fingers could this scar tissue on my chest be something they should really monitor?

Also I have a patch of skin on the end of my nose which my general practitioner could see but the a dermatologist Consultant couldn't, I also discussed with her the blood blister which had grown on my lip. She said that my lip may look far worse if it was taken off and that the hospital I went to was not a lazor hospital. Should I have asked to be sent to a hospital that did do lazor surgery?

I have all five illnesses for Scleroderma.

Regards to everyone and hoping for some advice.

lazychain

#2 judyt

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Posted 30 December 2011 - 12:33 AM

Hello Lazychain,

Welcome to the Forums. You will find heaps of comfort and advice here from other people who have the same problems as you are experiencing.

You have asked quite a few questions and I will try to answer some of them. It is possible your dry mouth and eyes are caused by Sjogren's syndrome. Quite a few of us have this condition in conjunction with Sclero and do the same as you to help the discomfort. You say you have a blood blister on your lip - it is possible that it is a telangectasia, once again lots of us have these little things to a greater or lesser degree, but I have not heard of anybody having them removed. I may be wrong and will stand corrected if I am.

You probably have a general practitioner who you see, apart from the Consultants at the hospital and that person should be able to tell you if the lump you have needs looking at. If I had a lump I would be asking questions of somebody who is likely to know - particularly if it is changing shape or size. I would actually be there double quick if it was me.

When you say you have all five illnesses I presume you mean Calcinosis, Raynauds, Esophogeal Dismotility, Sclerodactyly and Telangectasia which form CREST. Maybe the lump on your chest is a calcinosis - that is why it is better to ask a medically trained person.

Keep posting and let us know how you are getting on. The more we hear from other sufferers the more help we can be to one another.

Warm hugs and best wishes

JudyT

#3 Sweet

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Posted 30 December 2011 - 11:40 AM

Hello Lazychain,

Welcome to the Sclero Forums, I'm happy you've joined us.

I have learned to get everything checked out, and not try to second guess as to if it's something to worry about or not. I say that because I'm one to ignore most everything, and it's put me in a bind at times getting the reprimand of "Why didn't you tell me about this sooner". Sometimes we don't know what's important or not to the doctors, so if in doubt, bring it to their attention.
Warm and gentle hugs,

Pamela
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#4 Joelf

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Posted 30 December 2011 - 11:48 AM

Hi Lazychain,

Welcome to these forums!

I'm sorry to hear that you've been diagnosed with Scleroderma last year and are suffering with some unpleasant symptoms. It's a good thing that you are being regularly monitored by a rheumatologist, although we do recommend that you consult a Scleroderma specialist if possible as this is such a complex and unusual disease which sadly many rheumatologists do not have the expertise to deal with.

We do have a wealth of knowledge available so to give you some information and a little light reading, I've included links to CREST aka Limited Scleroderma, Raynaud's, Gastrointestinal involvement, Sjogren's and Scleroderma skin involvement which I hope you'll find interesting and helpful.

Judy and Sweet's advice about querying the lump (or in fact anything you feel might need his attention) with your general practitioner is very sound; I would agree and certainly bring it up on your next appointment.

Please do keep posting and let us know how you are getting on.

:emoticons-group-hug:

Kind regards,

Jo Frowde
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#5 Amanda Thorpe

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Posted 31 December 2011 - 03:33 PM

Hello Lazychain

Welcome to the forums! You've already been given lots of links so I'll just say welcome and keep on posting!

Take care.
Amanda Thorpe
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#6 marsha

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Posted 31 December 2011 - 07:15 PM

Hi Lazychain,
I too have "crest" form of scleroderma, the comfort and knowledge here is second to none!! I always have a way of feeling better. I am glad you found us but unhappy for the reasons.. Hope you find lots of useful information :)
Happy New year
Marsha

#7 Snowbird

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Posted 02 January 2012 - 02:59 PM

Welcome Lazychain (great name by the way!)

I could not agree more that you should have a 'scleroderma specialist' if you do not already have one. That was the best and smartest thing I did for myself for sure.

I also think you should have that lump looked at separately. It might not be scar tissue at all as Judy mentioned. Mind you, not all lumps are bad either so please do not worry yourself ahead of time. I actually have a few lumps, not calcinosis and none of which are the worrying kind luckily for me but I definitely get any new lump checked by my doctor. I don't want to become complacent either.

This is a terrific site for asking all your questions, there is always someone here 'in the know' :)
Sending good wishes your way!

#8 lazychain

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Posted 04 January 2012 - 02:24 AM

Hi Lazychain,

Welcome to these forums!

I'm sorry to hear that you've been diagnosed with Scleroderma last year and are suffering with some unpleasant symptoms. It's a good thing that you are being regularly monitored by a rheumatologist, although we do recommend that you consult a Scleroderma specialist if possible as this is such a complex and unusual disease which sadly many rheumatologists do not have the expertise to deal with.

We do have a wealth of knowledge available so to give you some information and a little light reading, I've included links to CREST aka Limited Scleroderma, Raynaud's, Gastrointestinal involvement, Sjogren's and Scleroderma skin involvement which I hope you'll find interesting and helpful.

Judy and Sweet's advice about querying the lump (or in fact anything you feel might need his attention) with your general practitioner is very sound; I would agree and certainly bring it up on your next appointment.

Please do keep posting and let us know how you are getting on.

:emoticons-group-hug:

Kind regards,


I think I have done the answer wrongly so I'll tell you all thank you very much for your replies. I am so surprised at the different places you all are - wish I'd sorted this one before. Today I'm going to ring for an appointment at the Doctors, I just hope that it's not too late, I've had this lump ages. I think that sometimes I get the feeling I'm bothering them. I will let you know how I get on.

I have written 2 or 3 posts but I think I've lost them all. I will have a try at replying directly to the scarring tissue. I expect it will take a few days before I can get my replies right on the Forum comments.

Just wanted to say thank you to everyone who answered my post and that I am making an appointment today to see the Doctor about the scarring lump.

Lazychain
xx

#9 Amanda Thorpe

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Posted 04 January 2012 - 02:25 PM

Hello Lazychain

To reply to a post is easy once you get the hang of it. At the bottom of the list of posts you want to reply to is a box titled "reply to this topic" you can either type directly into that box or click on "more reply options" at the bottom right hand corner. This will open up a new page and you can start typing your reply direct into that box. When you're done click on "add reply". You know what they say practice makes perfect so keep on posting!! Any problems and just let us know.

I hope the appointment goes well, remember to let us know the outcome.

Take care.
Amanda Thorpe
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