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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 thisisme

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Posted 05 February 2009 - 08:01 AM

Hello. I found a lump in my breast, last March and took myself off for a mammogram, nothing detected. Visited the general practitioner, by which time the skin, under both armpits was so tight and hard and extended into the breast tail, and my upper arms were like cobble stones. general practitioner said she had never seen anything like it and sent me off to breast clinic. He also said, he had never seen anything like it, could his colleagues have a look, they too were dumbfounded and advised I saw a dermatologist.

I Finally saw one, last November, he took one look, "You have Morphea" and asked his assistant, to give me a photocopy about it. I felt like a nobody, being treated in such a cold manner.

I have just had my follow-up with another doctor. What a difference, he saw me as a human being. He was almost 100% sure I have localized and deep morphea. he did an urgent biopsy. If he is correct, he will treat it aggressively, with light treatment and medication.

Why am I writing this. For no reason, today, I feel so low and can`t shake it off. It`s not my usual demeanour and I don`t like it. I suppose I am asking "Have you had it, how did you cope" By the way, I am 70, any other oldies like me :-) Also, are there any Londoners I could meet up with

Thank you for reading this.

Lynne
Take care.
Lynne

A trouble shared is halved, a joy shared is doubled

#2 Jeannie McClelland

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Posted 05 February 2009 - 08:43 AM

Hi Lynn,

I'd like to welcome you to the Forum. It's a great place to come for info and support from really understanding new friends. What an awful experience you had with that one doctor! I promise we won't send you away with a photocopy.

Your new doctor sounds like he is on the ball, as well as being someone you can work with. Most of us agree that once past the diagnosis point, the most important thing becomes having a doctor that you trust and feel is competent.

Have you had a look on our Morphea page? Lots of useful information there and we also have a page for morphea 'stories' from people with personal experience with it.

Hmmm, I'm working on 70! It's the new 50, or so I'm told. ;)

I'm really sorry you are having a down day (could the snow have anything to do with it?? :lol: ). This is definitely the place to come, although the warm hugs and 'cuppa's' are only virtual.

Will you let us know how the biopsy turns out and how you get on?

Best wishes and warm hugs,
Jeannie McClelland
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International Scleroderma Network

#3 thisisme

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Posted 05 February 2009 - 09:27 AM

Haha, how right you are. The doctor asked me how old I was and 54 came to my mind, I told him saying it must be wishful thinking :-)

I think you hit the nail on the head, indirectly, it was the snow. I took my 2yr old granddaughter sledding, after a while, I thought I would teach her how to make a "Snow fairy", so we lay on the snow..........my arms couldn`t make the wings, because of the restriction in my arms.

Thank you, for your insight. I had a good cry and feel better for it

Lynne
Take care.
Lynne

A trouble shared is halved, a joy shared is doubled

#4 Buttons

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Posted 05 February 2009 - 09:39 AM

Hi Lynne

Would just like to welcome you and to say there are lots of very friendly and helpful people on the site. Glad to hear that you are now getting some treatment from a doctor who seems to know what he's talking about.

Just to say I'm also from England but live further north than you, there are a number of us from the UK.

Take Care

Jensue

#5 Sweet

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Posted 05 February 2009 - 11:26 AM

Hi Lynne, and welcome to the Sclero Forums!

I'm so sorry to read about your troubles, but I'm sure glad you've joined us. You will find a wealth of information, support and friendship here, from people that truly understand!

Jeannie gave you a great link. I hope that it helps you. Post often and let us help you through all of this.
Warm and gentle hugs,

Pamela
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#6 Amanda Thorpe

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Posted 05 February 2009 - 01:30 PM

Hello Lynne

Welcome to the forum this is a great place to get and give support and information.

The doctor that gave you the photocopy, NHS finest no doubt. :lol:

I have sent you a private message regarding your request to meet others in London, I am a member of the Scleroderma Society UK so hope I can help you out with this.

Take care.

Amanda
Amanda Thorpe
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#7 Margaret

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Posted 05 February 2009 - 01:38 PM

<<today, I feel so low and can`t shake it off. It`s not my usual demeanour and I don`t like it. >>

Hi, Lynne ,

Welcome to the forum. If you have morphea, you have an autoimmune disease. Autoimmune diseases can also cause autoimmune depression. If it is not your usual demeanor, please talk to your doctor about it. You may have no control over your feelings (just like your morphea) but at least you can take pills for the depression.

Take care, Everyone.
Margaret

#8 Snowbird

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Posted 05 February 2009 - 02:02 PM

Hi Lynne

I just wanted to welcome you too. I'm sorry to hear you're having such an awful day. Perhaps tomorrow will be better. You'll be making lots of new friends here. It's a good place to be! :)
Sending good wishes your way!

#9 razz

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Posted 05 February 2009 - 03:04 PM

Hi Lynne,

First, I'd like to say welcome to our forum. I am sorry to hear you've encountered doctors who didn't treat you like a human being. It's a simple thing to ask for and doesn't cost anything. The doctor you're seeing now seems to have a good handle on your situation. I hope you start your light therapy right away.

The people here are so helpful and supportive. No matter how you're feeling, you can come here and I guarantee you will be feeling better shortly. Everyone supports and encourages each other. We all have had our "off days" :( where for no reason we just feel out of sorts. It can be a result of a number of things, but like Margaret says autoimmune diseases can also cause autoimmune depression and you should talk to your doctor about that. We also have a link with information about dealing with depression.

I am glad you found us and we look forward to hearing more about you. You will find the resources on this website helpful and blogs that will bring a smile to your face. I sure hope you're feeling like your usual self real soon! :)

Hugs,
Razz

P.S. Age is just a number. I'm 49 going on 30 (at least mentally).
Live well, Laugh often, Love much

#10 janey

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Posted 05 February 2009 - 03:52 PM

Hello Lynne,
I'd like to join the others in welcoming you to the ISN forums. Sorry it took you a while to find the right doctor, but unfortunately, that's not unusual for scleroderma. There are several types of scleroderma and all of them are difficult to diagnose in most cases. It takes a doctor that knows something about scleroderma and can recognize it when he or she sees it. So glad you found one.

I don't have morphea so I can't help you with any personal experience, but Jeannie has provided a link to some of the stories of people with morphea. You'll probably be able to relate to several of them. The feeling of depression is normal, but it is something that you need to deal with because it can only make things worse (as I'm sure you know). We do have a page on depression that you might want to take a look at. It's just a matter of finding what works for you. Anything to get your mind off of things and change your current routine. Of course a piece of chocolate never hurts either.

Again, welcome! Please keep us informed on how you are doing and how your treatments go.

Big Hugs,
Janey Willis
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#11 canon

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Posted 05 February 2009 - 04:40 PM

Welcome Lynne,

Sorry about you what you have just been through. I don't have much to add to what evryone else has said but wanted to greet you. Personally I think it is OK to have a good cry once in awhile; it does seem to help. Please keep us posted.

With gentle thoughts,

Judy
A happy heart is good medicine.

#12 thisisme

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Posted 05 February 2009 - 10:57 PM

Thank you all, soooo much, for your warm welcome and wishes.

I am feeling better today. I think understanding, where ones feelings are comeing from, is a great help, to feeling better.

Off to have my stitches out now. I will keep you updated, on how things progress.

Lynne :rolleyes:
Take care.
Lynne

A trouble shared is halved, a joy shared is doubled