Scl 70--a Guarantee?
Posted 03 March 2007 - 03:10 PM
Posted 03 March 2007 - 03:34 PM
Welcome to the forums! I am glad you found us, but sorry it is because of your recent symptoms and possible diagnosis of Scleroderma. The answer to your question is NO! There are some members here who have never had a positive ANA or SCL-70 and yet have all the clinical features of scleroderma and others who have a positive SCL-70, but have yet to develop symptoms. Here is an article you might find interesting:
Diagnostic significance of antinuclear antibodies
"Literature data indicate that the positive predictive value of ANA for the presence of CTD is 5-10%. Conversely, a negative ANA result does not rule out that CTD is present (negative predictive value: 98.5-99.3%)."
The one thing that you can say about this disease is it's unpredictability! It is impossible to predict what it will do/how it will progress (or won't progress) in any given individual. Although the possibilities of what might happen to you are very scary, it is NOT a foregone conclusion....and worry about it will just cause you a lot of stress and stress has been shown to exacerbate this disease! So, try to relax, take one day at a time, see the rheumatologist, and try not to worry about what might be (definitely easier said then done, I know!).
Please do keep us posted when you have your appointment and let us know what you learn and how you are doing.
Once again, welcome!
Posted 03 March 2007 - 04:48 PM
I am glad you have found us here but I am so sorry that you are here because of a pending diagnosis. It is scary, very scary in the beginning. Try not to read too much information yet. It is really easy to get on the "I'm not going to make it" slide. The most important thing you can do is take care of your self and your little one. I have had this for about 14 or 15 years now, I am married for a little over 10 and I have two girls 8 1/2 and 6. You can do it with kids!!!! You may need some help on some days and there will plenty of days the laundry doesn't get done.
Make sure you are seeing a scleroderma specialist not just a regular rhemie.
Please keep posting! We are all here to support you.
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)
Posted 03 March 2007 - 05:41 PM
Welcome. I was diagnosed a year ago in Jan. I am the mother of two beautiful precious boys ages 9 and 4. A year ago I felt as you do now. It was hard to try to educate myself without scaring myself to death! I know every thought you've had regarding your daughter.
My best advice to you is to not read too much of what's "out there" but instead read what's in here and ask lots of questions. Shelley and all of the moderators are so very well informed and educated and experienced with scleroderma that you can't find better advice or resources anywhere else. Also, there are so many caring helpful supportive people here that you will find they become fast friends.
As far as your scl-70 goes, from what I remember (and don't quote me) 0>10 is normal >10 = positive. I just looked for my old lab report to confirm that but I can't find it. I do remember that my scl-70 result was 168 though.
That is good that your lungs, BP and heart all look good. Try to focus on the positive. I know that is easier said than done too.
Take Care, and keep us posted.
Posted 03 March 2007 - 06:14 PM
I wanted to say welcome. I am glad you found this great resourse of information and some really great people!
I also went to the rheumytologist several years ago with muscle weakness, tight/sore muscles, fatigue, migraines and cold/burning hands. The results I got back were.....positive ANA, positive SCL-70, and high anti-thyroid antibodies. I am also in my 30's with children. these labs have not changed since then and I have had my ups and downs, but I have survived and am a stronger person for it. it took a while for my family to adjust, but we all appreciate and take advantage of my good days and just deal with my bad ones.
At first I was scared, sad, frustrated, angery....but now I have come to realize that this illness takes great patients, as does many other things in life. There may be a more severe time in our lives where we deal with scleroderma, but for now we just have to take it one day at a time, take care of ourselves and others, and seek out knowledgable doctors who can give us proper care when we need it.
To make the short story long, we are all here to help...hang in there!
Posted 04 March 2007 - 04:11 AM
Posted 04 March 2007 - 07:04 AM
Some of us have been at this for decades now, and although sclero and all CTD's are highly individual in porgression, it seems that most of us have outlived the "deadline" that a lot of info online will give you. I've been dealing with various CTD's for about 35 years now, although the sclero is "newer," and have found that symptoms will cycle. You'll have good days and weeks, then feel like garbage on others. Last year everyone thought it was over for me, then after several months in bed, I got back up! There have been many rough days, but at least the good ones are getting better than they were several months ago, so I'll take advantage of them. Getting medical attention quickly is a good thing since the doctor can keep track of what's happening, and there are good options out there these days. Stick around here for encouragement as well as medical info since it makes a huge difference in dealing with the rough days, and we'll be glad to help out!
Best wishes to you,
Posted 04 March 2007 - 10:31 AM
I'm a little late in responding to your question and it looks like you've been given some great information, so I just want to welcome you. One day at a time my friend, gather a lot of knowledge and you'll be able to navigate just fine through all of this.
Posted 04 March 2007 - 04:46 PM
I remember when I first started not feeling right. My blood tests came back abnormal, I read about scleroderma and I was terrified. I too have a little girl and cound't believe I would be gone in some years 3-10 or so.
I read everything. I read hundreds of articles. Hours and hours of research, patient stories. And It really sounded bleek. Diffuse Scleroderma doesn't have a good reputation. I was sure I knew it all... and it was all bad.
But now 17 month's later. After this website, and after another 10000+ hours of research... I found out I didn't know it all. The terrible prognosis I read about turned out not to actually be supported by the research. I found out that survival numbers were not 20% survival at 10 years like some "expert" MD's have written on webmd etc. There were more accurate studies posted on this website from experts that studied like 2500 cases over the past 15 years and the survival numbers ranged between 65-80% for diffuse patients. And that was 10 years ago.
Today many new treatments are helping patients stabilize. Stem cell transplants are creating remissions and are much safer than before. New drugs and therapies that you couldn't even imagine 10 years ago are very promising. Dr's now know much more about how the immune system causes this disease.
To sum it up. Stop thinking about dying. It's not based on logic or the facts! It's fear based on lack of knowledge. I'm not gonna tell you to stop reading or smile and value everyday (which is good advice anyhow). I'm just gonna say, this disease is not the beast it was. You can get better (if you even ever get scleroderma) and medical research is moving so fast it would make your head spin.
There are patients who have had stem cell transplants and have gotten 100% better and have stayed that way for 10 years. Everyday good research and dr's are trying to figure out how to copy these results for everyone who gets sick. Your young and healthy and your disease hasn't floored you so you'll be able to take advantage of all the treatment options.
Please know this... medicine, your early and mild condition, and advancing technology are all in your favor. Educate yourself and you will see.
Welcome to the board, and if you ever need any thing you can always email me.
You're gonna be ok.
Michael in Florida