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creleon

Raynaud and ANA Positive

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Hello Everyone,

 

First I apologise for my English, as it is not my mother tongue language.

 

My 15-year-old sister has had Raynaud for a few month and tested positive for anti-nuclear antibodies and my doctor talked about scleroderma.

 

I feel devastated. I can't eat or spend a minute without thinking about that mysterious disease I just discovered. However, I've had been told that it doesn't necessarily mean that she has the disease.

 

Can primary Raynaud disease  cause a "flare up" of ANA antibodies without meaning anything else? I feel like I can't wait to have a clear response.  I'm 20 and have never dealt with anything like that before.

 

Another blood test is planned in 3 months. I'm worried, especially because her Raynaud's foot is really bad like there is some little blood clot in her toes. I apologize for any mistake I may have made.

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Hi Creleon,

 

Welcome to Sclero Forums. I'm sorry that you are concerned for your sister. 

 

As it happens, Raynaud's can occur by itself or along with MANY other diseases, not just scleroderma, and so can positive ANA.  On average it takes about six years for women to be diagnosed with scleroderma, ten years for Sjogren's, and so on.  Just in general, we are talking about chronic diseases, although of course, in some cases, those diseases may be life threatening, too.  But many of them are very treatable, given all sorts of modern breakthroughs and with more on the horizon every day! 

 

It sounds like what you may be dealing with right now is fear of the unknown and of course, the perceived threat of possibly losing your sister, so unexpectedly. The threat of loss invokes a sense of dread and fear and anxiety, in all of us, which we handle with our own collection of coping skills. 

 

None of us are doctors or therapists, so we can't directly intervene here.  But I can assure you that what you are going through is entirely normal, and there are ways for you to deal with this successfully and to find ways to be a loving, happy support to your sister.  When caregivers become anxious or depressed, they naturally withdraw to try to protect their emotions. You can help your sister the most right now by figuring out how to quell your emotional reaction, which means developing new skills for becoming resilient. 

 

The general rule of thumb they give us is to allow ourselves two weeks from a major stressor (such as this) to return to our usual level of happiness.  By focusing on emotional healing, hobbies, friends, eating, sleeping, reading, studying and especially sports. Odds are, you'll feel much better by then!  But if not, please talk to your own doctor about it. It is extremely common for both patients and caregivers to find they benefit from counseling, medication, meditation, and support groups. 

 

Very very few of us have already developed the emotional fortitude to deal with such major threats to our stability, ahead of time. I mean, like, why bother, when life is going along okay enough for us? Once you get your own reaction quelled, THEN you can be the positive and encouraging support that your sister will welcome and appreciate. 

 

Happiness is not something that awaits for you, or her, until a diagnosis or treatment is complete, or perfect health is restored.  Happiness can be right here, right now, as you learn to cherish life even more dearly, having become so exquisitely aware that it doesn't last forever, for any of us. 

 

You can do this, Creleon.  We will be here for you, and for your sister, too.  And, it's not nearly as bad as it seems by all outward appearances. Find a slogan to rely on, that can lift you up through this.  You'll know your own when you find it. Maybe you already have one. What thought has sustained you during tough times before?  

 

I just hate the line, "It is what it is," but frankly, the line has helped me see what is, and not what I horribly imagined it to be, and that has brought me much more acceptance, and peace and awareness that there's only so much I can change.  Whatever brings you peace and joy and comfort, without harming yourself or others, rely on that now. 

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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Hi Creleon,

 

Welcome to these forums!

 

I'm very sorry to hear that your sister has had Raynaud's and worrying blood test results. As Shelley has said, the fear of the unknown is much worse than the fear of the actual disease. The blood test results are not always conclusive and it's possible that your sister may never develop any more symptoms and your fears for her will be groundless. Of course it isn't possible for us diagnose her, or tell you what her prognosis could be; she will have to see her own doctor once she's had the other blood test and if he considers it necessary, she may be referred to a listed scleroderma expert, who would be the best person to advise her on the course of treatment she might need. 

 

I would reiterate Shelley's advice; at this stage it may not be as bad as you fear and even if your sister does develop scleroderma, it is not necessarily the end of the world. I have it and I'm still alive, kicking and intend to be for many years to come (if only to get my money's worth from my pensions! :wink: ) So certainly, there is no need for you to despair at this particular point!

 

Please do keep us posted as to your sister's progress.

 

:hug-group:

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thank you so much for all your responses and support. I'm just extremely worried.

 

So is it quite common that primary Raynaud's gives those ANA positive results? I've had myself a lesser version of Raynaud's when I was 14. She is quite underweight and has not any symptoms apart from that. Have you ever encountered someone like that?

 

Thanks for your responses.

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Hi Creleon

 

As Shelley has advised, it is possible to have primary Raynaud's as a separate disease; it doesn't necessarily mean that scleroderma will automatically follow. Also the diagnosis of scleroderma (or any autoimmune disease, come to that) is not straightforward and unfortunately it can be very frustrating and sometimes can involve being diagnosed and then rediagnosed again, before anything definite can be decided.

 

Obviously, I do understand that this is a very worrying time for you, but unfortunately we cannot tell you how the disease might progress. It affects everybody differently and so I would recommend that your sister goes back to her primary doctor, who should be able to advise her as to the best course of action to take.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Okay, I understood that it's not just a simple diagnosis and thank you and Shelley for your kind words. I just wanted to know if there is a cure or if the person can have a normal life with this disease or it really depends; I heard that there is no cure which is frightening. 

 

And to add , I'm a very pessimistic person so in tough times, I'm just miserable, like right now. I love my sister so dearly that I can't imagine something wrong.Your slogan "it is what it is" is quite peaceful, so thank you for your support!

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Hi Creleon

 

Welcome to the forums and thank you for being such a caring, big sister.  I joined 12 years ago when my son was diagnosed at age 18 and read it's a  disease *that turns you to stone*.  I thought my son would die an early, painful death.  The internet is full of horror stories so be sure to rely on a good doctor and the prescribe treatments.  My son is doing quite well and each road bump is treated or taken care of.  There are medications these days that make life easier. 

 

Take care, everyone.

Margaret

Mom to Gareth, 30 years old, DS/ASD

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Thanks for your kind words, Margaret!

 

I'm actually her elder brother, but I'm very protective. What I've read and seen these couple of days on the internet is frightful; I'm truly in a dark place, but I'm dearly happy I found this incredible community because it seems that people here are so kind and encouraging. I'm also happy to hear that those auto immune diseases are manageable and in most cases not deadly and that we could live quite normally with it. I was just shocked that she is so young to have something like that.

 

I'm now hoping she'll never show any other symptoms and that her ANA test will be negative next time. I also heard about "false positive"; can somone explain this to me? Also, I live on a tropical island and even in normal temperatures 20 degrees celcius, my sister has Raynauds. Isn't that odd? Anyway, thank you everyone and I apologise again for my horrible spelling, I'm French.

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Hi Creleon,

 

How very fortunate your sister is to have such a caring and supportive brother! :happy:

 

A false positive is a test result which wrongly indicates that a particular condition or problem is present. However, the complicated nature of scleroderma means that blood tests can vary a lot depending on where they're taken and different laboratories can give different results. This is why blood tests are only a small part of the diagnostic process.

 

Please don't worry about your spelling and English grammar; it's a jolly sight better than my French!! :wink::lol: 

 

Kind regards,

 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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