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Biomarker for Diffuse Scleroderma skin has been discovered!


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Positive sc-70 no symptoms?


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#1 aka79

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Posted 18 October 2008 - 03:18 PM

Hi everybody, I learned about scleroderma after getting a positive sc-70 test. I don't think I have any symptoms other than IBS and maybe fatigue. Does this mean I could have or will have scleroderma? Could the IBS be the beginning of everything? My rheumatologist told me I don't have skin issues so don't worry about it. Should I find a new doctor or is life good for me? I am young and really scared...
Thanks a lot :) :)

#2 janey

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Posted 18 October 2008 - 03:46 PM

aka79,
Welcome to the ISN forums Darlin'. Since you did have a positive sc-70 test, did your doctor run any other tests? IBS is a very common problem and can be caused by so many things, therefore, having IBS doesn't indicate or really even suggest scleroderma in most cases. Of course I am not a doctor so please verify with you doctor. I don't have skin involvement because I have scleroderma sine scleroderma. You might want to ask your rheumatologist about that. If he doesn't know about it, then yes, I would get a second opinion. Scleroderma is a very hard disease to diagnose even when several symptoms are present, so my advice would be to move on with your life, try to get your IBS under control and be aware of your body. IF new symptoms start to arise, see your doctor.

The best thing you could do right now is keep your stress level low by doing the things you enjoy and living life as normal. Please stay in touch with us so we know how are doing. You've found a group of great friends.

Big Hugs,
Janey Willis
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#3 canon

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Posted 18 October 2008 - 04:54 PM

Welcome aka 79,

Janey has given you good advice as will others on this site and support. Can't think of anything else to add. Take care of yourself and read alot on the subject and stay alert. There is a huge internet now and there is knowledge that many of us were never privey to before. Don't let fear rule.

Wishing you gentle thoughts.

Judy
A happy heart is good medicine.

#4 jefa

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Posted 18 October 2008 - 06:13 PM

Hi, aka79

Welcome to the ISN Forums. Janey has given you some excellent advice. Get on top of that IBS with your doctors and get on with the important business of being young and involved with life. It is so easy to get carried away reading and obsessing about something you might have. The markers are there to point doctors in the right direction, but ultimately they will only treat clinical symptoms. Sounds like your rheumatologist is on the right track.
Warm wishes,
Jefa

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#5 aka79

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Posted 19 October 2008 - 02:11 AM

Thank you so much for your posts. I do have something else. I have 3 spider veins on my face and one on my hand, they never go away... I started getting these this year but did not think anything of it. After reading more about sclero it seems like a symptom. Now I am really scared, I'm 28 years old. I will call my doctor tomorrow...
I will keep you posted..


Janey, would you mind telling me how long you've had SINE and how it started? Is it under control?

Thanks and have a great day!

#6 LisaBulman

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Posted 19 October 2008 - 02:22 AM

Hi,
Welcome to the forums! You ahve already received great advice from Janey and Jefa.
Keep in touch with your dr and tell them of any and all symptoms you are having. I was diagnosed about 15 years ago. I have skin involvment in my hands mostly and the rest of my troubles are internal. As Jefa said get control of the ibs. Try not to obsess and learning too much too early can cause undue anxiety and stress. I was diagnosed in my early twenties, went on to marry, have two beautiful girls and I am living with sclero. Please keep us posted.

Hugs,
Lisa
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#7 janey

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Posted 19 October 2008 - 04:09 PM

Hey Darlin',
I was diagnosed in July 2003 after 8 months of multiple new symptoms. It seemed like something new was popping up each week or two - carpal, raynaud's, IBS, pneumonia, fatigue, muscle weakness, shortness of breath, swollen fingers which eventually started turning under, small mouth, difficulty swallowing, etc. I did actually have a teasing of hard skin on the back of my hands for about 4 months, but then it mysteriously disappeared. Today I'm doing very well in many respects. My doctors consider my diseases (sclero and polymyositis) in remission, tests show improvements or stability and I'm getting back into exercising. So life is good. :) Of course examples like Lisa and so many people of this forum have, through the years, giving me and so many others the knowledge to know "anything is possible."

Big Hugs,
Janey Willis
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#8 Amanda Thorpe

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Posted 20 October 2008 - 09:11 AM

Hello aka79

You've got to draw the fine line between being aware of new symptoms whilst living a normal life. My suggestion is to carry on regardless until something significant turns up that is of course IF something turns up at all.

I would just be cautious ot two things, a rheumatologist not aware of sine scleroderma as you don't want someone dismissing potential symptoms because they think there has to be skin involvement, too much information gathering as lots of it may never apply to you. I have diffuse SSc and in the beginning read a little black and white leaflet of doom that detailed in gory glory every possible symptom from facial changes to feacol leakage and everything in between. Needless to say over a year on and I still don't have the the whole myriad of symptoms described so worried for a time for no reason.

Even if worse case scenario, you became one of us, there is still life, good life, to be had after scleroderma moves in. It's just different to what you expected it would be.

Take care.

Amanda
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#9 aka79

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Posted 20 October 2008 - 12:09 PM

Ladies,
My name is Ana and I´m from Florida. You guys are awesome. You are so right. You words of hope really soothe my soul during this bizarre time. I feel like my life has stopped until I get a diagnose. I can´t sleep, work or talk to my family or friends. I know this has to stop regardless of a diagnosis. It´s been hard doing all the tests and everything. I´m waiting for more blood tests. Also, I had an endoscopy today, they told me I have esophagitis and mild gastritis. I am waiting for the biopsy. I also have mild discomfort when I swallow. I´ve had carpal tunnel on both hands for about 6 months. It´s like now I have been putting all the pieces together and it kind of adds up.

So, to me I do have scleroderma. I can´t think differently even if I try. I am depressed and can´t function.

However, when I sat on the computer and read your posts I felt a lot better. I am not alone, there is life after and with this and there is hope. I was also reassured when I read that treatments have improved significantly in the past 5 years. It´s great to see that you are doing well.

I will focus on today and the fact that I feel good, that I am not in pain and hopefully it will stay that way. I can still do all the same things I was doing 3 weeks ago before the test.

Thank you all

Hugs,

Ana

#10 aka79

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Posted 22 October 2008 - 10:28 AM

Okay so I have been diagnosed by my IM doctor. My no symptoms condition has changed since last week. I have serious GERD, my eyes are itchy and the palm of my left hand is getting stiff. I can´t open my hand completely.

I am devastated. Will go see my rheumatologist on Monday but she said I need more tests before starting treatment. Everyday I get a new symptom, I hope it doesn´t get too late.

I really feel like jumping off a cliff right now. My husband got a promotion and we were moving to Holland in January. This has been his dream since I met him. I don´t think we could move. How could I? I don´t see how our lives will be normal again. I almost want to divorce him and let him find a healthy woman that can give him kids and can grow old with him.

Sorry about being so depressive I just don´t think I will ever feel better or be happy again.

Does it ever get better?

Ana

#11 Margaret

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Posted 22 October 2008 - 11:34 AM

Hi Ana ,

Welcome to the forums. I am concerned about your emotional wellbeing only because my own son dealt with it when first diagnosed. He was only 18 years old when diagnosed. Another symptom of Sclero is autoimmune depression. The same autoimmune reaction that causes sclero can also cause the serotonin levels to drop and may send you into a major depression. PLEASE, don't be afraid to discuss this on Monday with your rheumatologist. Get on medications ASAP if you really feel so depressed. It's not something that you can control or should be ashamed of. It's just another symptom of sclero. As for moving to Holland.....go. This is an International forum and I am sure there will be others to give you advice from there.

Take care, Everyone.
Margaret

#12 mutsy67

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Posted 22 October 2008 - 11:47 AM

Oh Ana,
I really, really feel for you. Please stay brave and understand that people love you for who you are not what you have.

I found out about my scl-70 this past July by accident when the rheumatologist that I had just started seeing closed her practice. I thought I had RA from what she'd told me. I picked up the copy of my file - there it was positive scl-70 with a nucleor (sp?) pattern and elevated titer. I drove home and Googled it and just sat and stared at the screen with tears running down my face. My son (my only) was moving in a few weeks to start his freshman year of college 2,000 miles away from us and I was already so emotional about that and all I could think of was this was the end of my family.

It has been a hard few months and I've had many trials with finding a new doctor (I have virtually no skin tightening and many doctors think that is necessary). And while looking I was also challenged then with finding a pulmonologist, a GI and a cardiologist. I feel like all I've done is go to doctor's appointments and every other one I went to ended up not knowing enough for me to feel comfortable staying.

The people on this forum kept me moving forward on my worst days. Sometimes because I had posted a question or comment but other times when I logged in to just read/lurk. It helps so much to find that there are so many people living full and happy lives with Scleroderma. They give me perspective and reminds me to not limit myself to my diagnosis.

Life isn't a sprint - it's a marathon, and I expect to run the good race and I expect you to pass me by!

Go for it Ana!

In compassion and understanding,
Shari
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#13 Margaret

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Posted 22 October 2008 - 11:56 AM

<<I really feel like jumping off a cliff right now. >>

Oh.......it only took him 1-2 months on Plaquenil before he was back to his old self. He had positive blood work, too, along with esophageal dysmotility, restrictive lung issues, major fatigue, weight loss, loss of vocal cords, depression, but no skin issues. If you can start the medications now, then you may be feeling your old self by January!!! Just an idea.

Take care, Everyone.
Margaret

#14 Amanda Thorpe

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Posted 22 October 2008 - 12:27 PM

Hello Ana

I have replied to your pm and please feel free to come back to me. Discuss everything with your rheumatologist as Peggy says, I didn't know about the sclero related depression because of affected seratonin levels.

Move if you both feel up to it and when they ask you at customs "anything to declare" reply "yeah baby!"

There are details on the forum about sclero specialists worldwide.

Take care.

Amanda
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#15 aka79

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Posted 23 October 2008 - 12:13 PM

Thank you all for you good advice. I feel a little better today.
I will keep you posted. I have a lot to do, tests, doctors, etc. I dont even know what my treatment will be. I wish I was taking something right now. I get new symptoms everyday. Maybe I need to start a new blog with a different title :).
Hugs to all,
Ana

#16 ozzy69

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Posted 24 October 2008 - 01:55 PM

Hi aka,

I can truely relate to the ups and down of being diagnosed. I was diagnosed about 4 weeks ago. I have had sad days and good days. The worst is not knowing what to expect. I have not started any treatments yet but go back to my doctor on Nov 13th to talk about options. I think I will feel better after that.

Hope you feel better,
Hugs
Nina Lynn

#17 omaeva

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Posted 25 October 2008 - 11:13 AM

Hi Welcome!

All I can say is that it all can be very scary, but be aware of your symptoms and if you feel something is wrong def push for it.
Other than that stayyy ACTIVE!.

I'm 23 now and before being diagnosed I was tired all the time and felt sickly, fevers etc. Along with other sclero symptoms. But I also got really active and interested in clean eating and fitness overall. Now I weight left and havent' ever felt better. I still get fatigued, but it's nothing like it's been before. And I think some other symptoms have decreased as well.