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I am worried - please help me!


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#1 rainbow

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Posted 11 September 2008 - 03:05 AM

Hi!
I am new in here. I am a girl from Norway, 28 years old and have a son that is 2 years old.

I went to see my doctor a while ago, because I was tired and dizzy and did not know what was going on. (By the way.. sorry if I can't spell everything right!) The doctor ordered all kinds of blood tests, just to be sure - including antibodies. When it came back, I had tested positive for anti-centromere antibodies, and the doctor told me this was most often seen with limited scerloderma. I went home and started reading about it on the internet - and it really freaked me out! I got SO scared!

The doctor sent me to see a rheumathologist, and I have just been to see him now. He had ordered x-rays both of may hands and my lungs and heart beforehand, and lots of extra blood test. When I came there he looked at and felt my skin, and asked me a lot of questions. His conclusion was that I don't have any sign or symptom of CREST or any other rheumatic illness.

Which was a good answer to get in itself. But no my mind is confused. Why do I have the anti-centromere antibodies then? Could it be that I am about to develop CREST, but haven't had any symptoms yet? Or can anti-centromere be an indication of something else? My head is full of questions.. and the Rheumathologist couldn't give me any comforting answers. I asked him: "What is the chances I will get CREST? Can the antibodies mean something else?".. he didn't know. So as far as I understand, I'll have to live with this unsureness for the rest of my life...

Or.. can anyone out there give me some answers to these question? Can a healthy person have anti-centromere, without ever getting CREST? I hope so... I am scared, because I am young and have a beautiful little son to look after!

I can mention that I have never had Raynaud's.. and I understand that this is a very common symptom. The rheumatologist said that some can have this for 10 years before they get any more symptoms. It comforts me a little bit that I don't have this...

Thank you for reading, and I hope someone can answer me :rolleyes:

#2 jefa

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Posted 11 September 2008 - 04:31 AM

Hi, Rainbow, and welcome to the ISN Sclero Forums. You will find many of us have become freaked out at some point by what we read on the internet. I believe there are other forum members who have tested positive for anti-centromere antibodies who have never developed any symptoms.

In this MedicineNet article on Antinuclear Antibodies is the following information:

ANAs can be found in approximately 5% of the normal population, usually in low titers (low levels). These people usually have no disease. Titers of lower than 1:80 are less likely to be significant. (ANA titers of less than or equal to 1:40 are considered negative.) Even higher titers are often insignificant in patients over 60 years of age. Ultimately, the ANA result must be interpreted in the specific context of an individual patient's symptoms and other test results. It may or may not be significant in a given individual.

I am not a doctor, but in your circumstances I would try not to worry unnecessarily. Anti-centromere antibodies can also be present with Sjogren's or Autoimmune Overlap Syndrome. Continue to follow up with your doctor's on symptoms which may arise, but live your life and enjoy your young son. Try not to stress yourself too much anticipating what 'might happen' someday. In the meantime, please look around. You will find us all very open and willing to share experiences.
Warm wishes,
Jefa

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#3 rainbow

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Posted 11 September 2008 - 06:52 AM

Thank you for your answer!
I don't think I have a low level of ANA. It says in the answer that I have anti-centromere - 6. I don't know what the "6" means.. Do you? I guess it's a high level.. if 0 or 1 is the normal?

What bothers me is that this blood test result will make me go and look for symptoms all the time, and never allow my mind to rest for the thought of perhaps having scleroderma.

Is it true that CREST has bether prognoses than the systemic scleroderma? What are the prognoses with CREST - is it usually fatal, og can you get old with it? It would be nice if people out dere living with CREST could tell me a little about what their life is like... Perhaps it will make me less frightened....

Thanx! :)

#4 janey

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Posted 11 September 2008 - 07:27 AM

Hello Rainbow,
I'd like to join Carrie in welcoming you to the ISN forums. I'm sorry that you have joined us due to concerns of having CREST. You have posed some great, but hard questions. I tried to find out what was "normal" for Anti-centromere antibodies (ACA), but have been unsuccessful. I'm not a doctor, so what I say is based on what I can get off this site and other reliable sites. As you already know, a "postiive" ACA is indicative of CREST, but not diffuse scleroderma. But then there is a slight chance that it could be a false positive meaning you don't have any type of scleroderma.

We do have a good section on CREST so please read through some of the articles if you choose. They might help with some of your questions. Yes, it is true that CREST has a better prognosis than diffuse systemic scleroderma. There are people on this forum that have had CREST for several decades. With CREST, you only need to have 2 of the indicators for diagnosis. For example, you could have only calcinosis and esophageal dysmotility. You don't have to have Raynaud's to have a diagnosis of CREST.

If you scroll down the CREST page, you can read several stories from people who have CREST. One story is from a woman who was diagnosed in 1971. She is now 53. The picture on her page is her next to her daughter. Her daughter is in a wedding dress, so obviously, CREST didn't stop her from raising a family. She looks very happy. Being scared at first is normal, but I think the more you read about others' experiences and learn that many of us have dealt with scleroderma for years, that your fears will start to diminish. Right now you just need to continue to work with your doctor and determine what is really going on. That way you can get the proper treatment for whatever it turns out to be.

So glad that you have brought your concerns to the forum. It's a great group that will provide you with lots of information and support. Please keep us informed on any new news.

Big Hugs,


Janey Willis
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#5 Sweet

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Posted 11 September 2008 - 11:47 AM

Hi Rainbow,

Welcome to the Sclero Forums. I'm so happy you've joined us. Regardless of what you have going on you will receive great information, support and friendship here. Carrie and Janey have given you a few really good links. I hope you have found them helpful.

We are all in this together, just take one day at a time.
Warm and gentle hugs,

Pamela
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#6 Amanda Thorpe

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Posted 11 September 2008 - 12:29 PM

Hello Rainbow

Welcome to this forum, you will already have gathered from the other posts that you are in the right place to discover excellent information and share in personal experiences.

I have diffuse scleroderma systemic sclerosis (SSc), diagnosed just over a year ago and I no longer worry about what may or may not happen because (1) I have no control over it nor does any other human being (2) worrying about it makes no difference to the outcome.

Try not to worry about what may or may not happen, at present you have not been given a firm diagnosis of CREST so live accordingly. Even if, worst case scenario, you developed CREST in the future, there is ife, good life, after scleroderma, it's just different to what you thought it would be like.

Apart from this site I would take what you read on the internet with a pinch of salt because, instead, as suggested, read the stories on this site about people living long and successfully with scleroderma.

Please keep posting because it's better to express how you feel.

Take care.

Amanda
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#7 canon

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Posted 11 September 2008 - 12:45 PM

Welcome Rainbow,

The people on this forum do understand much about scleroderma and are very supportive. It is nice to hear that you don't have any other symptoms, actually it is wonderful. Take one day at a time and live your life. You will find coping skills for what you need in life as you go.

Can't think of anything else that hasn't already been said.

Take care,

Judy
A happy heart is good medicine.

#8 eah

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Posted 11 September 2008 - 06:25 PM

Hi,

In 2000, I was in my early thirties with 3 young kids and I too had anti-centromere antibodies, fatigue, reflux, raynouds (mild) and had episodes of dizziness. Please try not to let the blood test consume you. I would recommend you see a scleroderma specialist for peace of mind. If you have no other symptoms, they will probably just monitor you for any additional symptoms. Even if you do have limited scleroderma, it can be managed with medication. They treat symptoms as they appear. I know it is very upsetting to hear about the blood work and then read about all the worse case scenarios on the internet. Not everyone with scleroderma has all the symptoms. I still do not have any skin involvement. I am able to take care of my kids and work. I hope this helps. Please feel free to e-mail me with any questions. Take care.

EH
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#9 bowbec

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Posted 12 September 2008 - 05:07 AM

Rainbow,
Please look at your glass half full NOT half empty.
You have been given excellent advise already.
Again, Not everyone with scleroderma has all the symptoms.
I have Systemic Scleroderma and I am still able to work, I rarely miss a day.
I have 7 grandchildren and I keep them often. (not all at the same time though).
Look on the positive side. You are young and every day research reveils new treatment for Scleroderma.
I hope this helps.
Bless~
Becky
Diagnosed with Diffuse Systemic Scleroderma May 2005
Raynaud's, GI, esophagus, skin and lung involvement.

#10 Snowbird

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Posted 14 September 2008 - 04:18 PM

Hi Rainbow

The others have offered you great advice and now I'll fill you in on my journey and 2 cents worth....

My understanding is that CREST is the same as Systemic Scleroderma Limited/CREST. Some doctors call it Limited and other doctors call it CREST but it's the same thing. Like Janey said, remember that you need at least 2 symptoms in CREST which you do not have now (plus the bloodwork) to be diagnosed with this disease. You're right, that's a good thing for you just now.

My so called short version story....I was told that I had Systemic Scleroderma Limited/CREST by a Rheumatologist (but not by one that specializes in scleroderma and there are loads of them that don't know hardly anything about this disease as you have likely already learned from reading many posts here!). Yes, like you and the others here, I was more than scared too, who wouldn't be? In my case, I also wanted another opinion, one with a scleroderma specialist to be double sure there was no mistake made (it took me 1 year later to get in to see this specialist). Well, she told me that in her opinion, I do not have scleroderma....like you, I wondered as well what about the blood work because mine was also anti-centromere pattern and high which is uncommon. Also like you, I don't show clinical symptoms to actually be diagnosed with this disease. Again like you, I do have "things going on" and have for many years but....so far, so good. Anyway, what my specialist said is that in her opinion, I am diagnosed with "undifferentiated connective tissue disorder". She will continue to monitor me regularly as my rheumatologist, in case my health ever declines. I am to call her if I ever get anything that worries/scares me to discuss it with her. They can never tell you if it will happen or when it will happen because nobody knows for sure if it will even happen. So, it could happen and then again it might never happen....aaahhh....it's the way weird autoimmune diseases behave.

So this leaves me with the only advice I can personally offer you from my experience....keep a good rheumatogolist specialist so that they can continue to monitor you forever (just in case over time other symptoms ever come to light) whether it be from scleroderma or some other disease that might cause them since you also have 'things' going on because it is best to always be sure and stay on top of things. Yes, because of your bloodwork, this disease will likely always be in the back of your mind...it would only be natural to assume that's what they might look for first if you ever get sick and it stands to theory because of that....but, in the meantime, try your best to leave it there (in the back of your mind), where it belongs for now and just continue on with your life. If symptoms happen over time that worry you, then be sure to discuss them with your doctor right away...that's my plan anyway.

I have made some wonderful supportive friends here and I plan to stay up-to-date on this disease as best I can (just in case I ever need to know more) and mostly right now because I hope I can also return some of that great support that I received from everyone here for so long. Private Message me if you want to. Take care! :)
Sending good wishes your way!

#11 debonair susie

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Posted 25 September 2008 - 08:10 AM

Hi Rainbow,

You have made a good move...joining our family.

I'm sorry you're havving to hang in limbo as you wait.

Not surprisingly, folks here have come forward with alot of good information/links for you to look over.

I don't remember seeing waht kind of doctor you saw, but if possible, you might seek out a rheumatologist or gastrointerologist, if you have access to either/both.

I have the sense the doctor you saw may not have much knowledge in this area, which would cause me to feel uneasy, too.

Please let us know how you're doing and if you are able to see another dr?

Hugs,
Susie
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