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Biomarker for Diffuse Scleroderma skin has been discovered!


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Manchester Based lSSc Newly Diagnosed


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#1 Lil Dee

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Posted 11 February 2010 - 04:33 AM

Hello to you all !!
Well, this is me....married to a wonderful young(er) man ;) no kids, but a very sweet b&w moggy called Molly.
I've been struggling with Raynauds for about five years now, and have progressivley gone down hill with fatigue. I've started having issues with gastro and hard skin starting to form on my fingers. It's like I hit the downhill slope on the roller-caoster of life ! :wacko:

I got my diagnosis (lssc) about six months ago, and have just been back to get the results of my x-rays etc. Fortunatly, it was good news *phew* and seems not to have affected anything internal as yet.

So, I thought I'd try and find a few others that can help me understand what's happening to me, and maybe meet some friends along the way. If you're really lucky, I may even be able to help some of you guys out too (though that is something that will have to be seen to be believed !!)

I'm a regular on several other forums, so I'm no stranger to how these places work, and I look forwards to meeting you all, and making more "cyber-friends" - and maybe having a little fun with you all once in a while, which will hopefully help brighten our days :VeryHappy:

#2 Sheryl

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Posted 11 February 2010 - 04:42 AM

Lil Dee,
Welcome to our ISN Forum. I'm sorry to hear that your Raynaud's condition has progressed and that you now have been diagnosed with Limited Scleroderma. We have a great medical section that you will have fun browsing through. I hope you get to meet many new people here with common ailments and find friends along the way. We have a great group of people whom take the time to write and ease the stress or pain others are feeling with ideas or easy fixes that do help us in many ways. I'm looking forward to learning more about you and how you are coping with your latest illness.
Strength and Warmth,
Sheryl

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#3 Amanda Thorpe

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Posted 11 February 2010 - 08:38 AM

Hello Lil Dee

Welcome to the forum! As Sheryl has said we have a lot of information on site that may be of interest to you about Raynaud's and limited scleroderma.

Take care.
Amanda Thorpe
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#4 Joelf

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Posted 11 February 2010 - 10:16 AM

Hi Lil Dee

Welcome to this friendly and informative forum although it's a shame you've been diagnosed with Scleroderma in order to find us.

I also have Limited Sclero which unfortunately has affected my lungs although the amount of skin involvement I have is minimal (merely the tips of my fingers.) I do suffer with Raynaud's quite badly especially during this freezing weather we've been experiencing. :huh:

Like you I am married with no children although my husband isn't younger than me (I should be so lucky!! ;) :lol: ) and we don't have a cat but have 2 dogs :wub: whom we love very much.

I'm looking forward to reading more of your posts. :)

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#5 Lil Dee

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Posted 11 February 2010 - 10:25 PM

Thanks for the welcome guys !! I think I may quite like it around here :VeryHappy:

Sheryl, you sound very calm and collected, which is something I need around me right now, especially whilst waiting to find out which type of Scleroderma I had. I'm not having a good time in my working life currently, which is piling on the STRESS - which I know is not good for me, so I'm trying to work out how to reduce that at the moment.

Amands, I have already looked at a fair amount of the information on here, and it has been a tremendous help to me - there are so many myths out in cyber world, it's good to have somewhere that you can rely on.

Jo - Trust me, if we didn't both work full time, my hubby would have brought a dog home a long time ago, and the cat would have had to live with it !! You're so right about the weather at the moment, I don't think I've left the house without my hat, scarf and mittens for months !! We live very close to Woodfrod - the place where it hit -21 over the really cold spell *brrrrrr* I must admit to looking forwards to summer far more than most, if only so I don't have to take 10 minutes getting ready to step out of the house each morning.

Take care everyone. LD x

#6 Sweet

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Posted 12 February 2010 - 11:18 AM

Hello LD and welcome!!!

Really glad you've joined us, but sure sorry it's due to your Raynaud's. I've been seeing all kind of colors this winter, and we've actually had a fairly mild winter...hmmmm

Anyway, I'm looking forward to knowing you better :emoticon-hug:
Warm and gentle hugs,

Pamela
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#7 Shelley Ensz

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Posted 26 February 2010 - 07:27 AM

Hi Lil Dee,

Congratulations -- you graduated from the Welcome forum awhile ago, but I am just now moving this thread to our Main forum.
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#8 Buttons

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Posted 26 February 2010 - 08:46 AM

Hi Lil Dee

Glad to see someone else from the UK.

Hope to see you in the chat room on a Wednesday evening when quite a few of us get together.

I was diagnosed with LSSc about 2½ years ago, I have bad Raynaud's along with the fatigue, muscle & joint pains along with a few other issues.

Buttons

#9 Lil Dee

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Posted 28 February 2010 - 12:49 AM

Thanks Buttons, I'll see what I can do. One of my biggest issues at the moment is the fatigue - I work full time, so I tend to crash quite early in the evenings. My social life's just one long zzzzzzzzzzzzzzz !! :rolleyes:

#10 agilitygirl

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Posted 28 February 2010 - 04:57 AM

Lil Dee, I'm with you about the snoozing early. I was not a night owl to begin with, but come on, falling asleep at 6 PM is just too much! Luckily I do not have a family to take care of and my dogs just cuddle up with me.

#11 Joelf

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Posted 01 March 2010 - 10:30 AM

Lil Dee, even before I had Sclero I was never a late night person; I'm a lark and one of those disgustingly bright and breezy people first thing in the morning!! ;) I once went to a party at 10pm, sat down on a very comfortable sofa and fell asleep all evening until about 3am when most people were going home!! :blush: I was totally mortified and just hoped that I hadn't been snoring or dribbling all night!! :unsure: :lol: :lol:

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#12 Lynnie

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Posted 01 March 2010 - 02:45 PM

Hi my name is Lynn I live in the UK, I too have been on the roller coaster ride with the disease. I was finally diagnosed after a while of seeing my general practitioner with bits of this and that!! I am a nurse and at 52 today!! In June 2009, my symptoms are not dissimilar to yours, my main is stiff hands feet and elbows and shoulders, and Raynaud's in my hands and feet, muscle aches, and like you am new to all this, and feel so isolated as people just don't get what is wrong with us do they! And when they say oh I am sorry I know how you feel they don't have a clue unless they have it. I can imagine like me you feel frustrated that simple tasks you used to do easily aren't anymore. I cope by being ever positive plus face each challenge that comes along with as much good humour that I can muster,and inform people why I am the way I am to hopefully educate them it works wonders if they understand, they can help and support you. I've found this forum and for the first time I don't feel so alone and its a good feeling!! Feel free to reply anytime would be lovely to chat with you take care and keep the faith x

#13 Lynnie

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Posted 01 March 2010 - 02:55 PM

Hi lilly dee am a fellow UK sufferer too. I was beginning to wonder how many of us they were, haha. I was diagnosed last October and have limited scleroderma and the stiffness and Raynaud's in my hands and feet plus muscle aches and the fatigue is awful. I found this forum a day or so ago and the loneliness and isolation doesn't feel so bad now that I'm posting a new friend that suffers like me!! It would be lovely to keep in touch take care xx

#14 Lynnie

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Posted 01 March 2010 - 03:03 PM

Hi Buttons I to am a fellow UK sufferer, was diagnosed last October. I suffer similar symptoms as you do. I would love to hear from you. I am new to the forum and looking to meet people like me for company and support, and do the same for them as this disease isolates you plus you feel your the only one and coming on here you sadly realise you're not!! But I am a cheery soul most of the time and stay positive and meet each new day and challenge with as much humour as I can muster, haha. Please reply would love to chat to you take care x

#15 Buttons

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Posted 02 March 2010 - 03:55 AM

Hi Lynnie

It's a very friendly forum which members are understanding of all our medical issues which means you know someone will have experienced a symptom themselves or can point you in the right direction. I was 54 yesterday and was previously a teacher until I got IHR 18 months ago.

Take Care

Buttons

#16 Deb1million

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Posted 02 March 2010 - 06:18 AM

Hello LilDee, Lynnie, Buttons and friends

Firstly...... HAPPY BIRTHDAY to Lynnie and Buttons for yesterday!! :happy-day:


I'm another UK sclero lady. There are quite a few of us on here! I had also felt totally alone with my diagnosis in December 2009, but this site has been so friendly and informative, I don't know what I would have done without it!

I have diffuse systemic sclero, as well as autoimmune hepatitis, lupus, stage 3 kidney failure, and type 1 diabetes. I refuse to allow any of these conditions (or their accompanying buddies of Raynaud's, Sjogren's, etc.) to get me down. You guys sound as positive as I feel, so I'm sure we will have lots to chat about in the future on here.

Debs

#17 Lynnie

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Posted 02 March 2010 - 02:13 PM

Hi Deb Hurrah think we may of found a sclero family to natter the pants off each other+not bore our healthy friends to death hahaha,and on a serious note listen and support each other,when we have hard days and we get scared at whats happening to us,as I said to buttons earlier,ive seemed to have lost the heavy weight of feeling alone by finding this site at last,and the feeling of isolation,ignorance isnt so scarey as it was bless you for allowing me to chat along with you both,without sounding soppy it means a great deal,at 52 today life maybe not the scarey lonely place it was please post when you can even if its to have a good moan ill always reply and try and cheer you up thats what us nurses do!! take care until next time xx

#18 Lil Dee

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Posted 04 March 2010 - 02:11 AM

WOW !! Hello everyone LOL !!! :jump-for-joy:

How lovely is this ! All of us here to help out, listen to each other and generally make it OK to feel like *ahem* rubbish on the days when it gets a little too much.

I trust that both Lynn and Buttons had a fantastic birthday *raises virtual sparkling water* (I can't cope with acohol at the moment either, Meh !)

I will see what I can do about coming on-line, but to explain a little more, I tend to come home and crash, then get going again at about half seven, when I've had a power nap. Sometimes I go without (last night I lasted til half nine, part way thru a program - which is annoying as I was trying to watch it !) but for most part, I have what I call my siesta - I knew I should have been born in a warmer climate :rolleyes:

Joelf, I am def NOT a morning person either I'm sorry to say. I'm a grouch first thing, unless I happen to be away on holiday, and it's all nice and warm and the sun is shining, in which case, I can't wait to get up and at the day. Again, it's that warmer climate....

I suspect we have the makings of a nice little family here. :flowers:

#19 Lynnie

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Posted 06 March 2010 - 01:30 PM

Hi Dee,

I am not an AM person either haha but come to life at night. Sstill, I have found the record button on digital great for missing bits, my hubbie has made it an art form sees the opening and the credits and says I didn't get that film! Takes him 4 attempts to see it through haha. I hope IT hasn't been to troublesome this week. I've been a bit up and down was very sore and stiff yesterday but had been on my feet at work for 7 hours. It's not easy having to work and pace the day is it, but we have to keep going and not give in if this disease was a two timing man I throw him out!! But,alas it isn't and were stuck with it!

Keep smiling hun till next time,

Lynn x