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Author Topic: What happens when it's real?  (Read 353 times)

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Offline Justsmilealready

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What happens when it's real?
« on: September 03, 2014, 04:36:29 PM »
I received positive blood results for a rare autoimmune disease. The doctor is hoping it's a false positive. I see a rheumatologist the 30th. I guess I'm wondering how I'll deal with the anxiety if I am diagnosed. I have such a paralyzingly phobia of uncertainty...how will I cope with legitimate illness?!
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Offline brittanyborg

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Re: What happens when it's real?
« Reply #1 on: September 03, 2014, 04:46:00 PM »
Okay I want you to know that I know just by the doctor saying a false positive is possible means that people get false positives often. There are certain tests that frequently can give off false positives due to other chemicals or things going on within your body that affect the test.
There are so many tests that give hard negatives but are known for false positives - just the mere fact that doctor suggested a re-test is a good thing because he knows the possibility of a false positive is likely.

So here's what you need to do.
1. Stay as calm as possible until you see the rheumatologist and don't make up crazy "what if" scenarios in your head until you know for sure - there's absolutely no sense in worrying until you have a definite 100% answer.
2. You need to remember that you - like many other anxiety suffers have big issues dealing with uncertainty (it's what fuels our anxiety/panic) however even though we have this crazy irrational fear of uncertainty, we actually deal pretty well with certainty. We fear the unknown, not what we do know.

If (worst case scenario) it turns out that you have this autoimmune disease then you take the steps for recovery, and take comfort in the fact that you have a legitimate diagnosis and then you can work towards healing and treating and getting better. You're much stronger than you think and you can beat anything that comes your way. Don't worry until you know for sure, and like I said if it turns out to be a real positive (which we don't know yet) then you can cross that bridge when you come to it and overcome it.

If you don't mind me asking, which autoimmune disease? I know a little bit about autoimmune disease and they are nasty things but they can be treated and worked with.
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Offline sixpack

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Re: What happens when it's real?
« Reply #2 on: September 03, 2014, 04:48:03 PM »
autoimmune blood tests often come back with false positives.   I've had it happen to me.  then the next time it was tested it came back negative.  docs really don't jump up and down when this happens.  often auto immune disorders are NOT dx'd by a ONE positive blood test.  they are dx'd by repeat + and coupled with symptoms the patient is having.

my youngest had her ANA comeback positive.  we saw a rheumy.  she was dx'd with her issue.  we treated it and went on.


the truth is people are dx'd with stuff all of the time---hypo and non-hypo people.  If you end up being dx'd with a legit illness, you will deal with it just fine and it won't be nearly as bad as your anxiety over being dx'd with something ever was.. 
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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline Justsmilealready

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Re: What happens when it's real?
« Reply #3 on: September 03, 2014, 04:57:34 PM »
I guess I'm freaking out because it wasn't just ANA positive...it specifically showed positive for Mixed Connective Tissue Disease but I showed no inflammation in my body. It's supposedly rare and a mix of autoimmune disease. I started to research it and read something terrifying so I stopped.  I feel like if I have it, I'm going to die because it's so terrible.  The uncertainty of not knowing what it really is makes me nervous but I know google would only be worse!

Thanks so much for those answers. Very true.
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Offline mollyfin

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Re: What happens when it's real?
« Reply #4 on: September 03, 2014, 05:02:12 PM »
Stop researching it.  I know it seems like a good idea, but it'll scare you more than anything else.

A very few people here have been diagnosed with serious illnesses.  Most of them reported that, amazingly, the anxiety decreased a lot by knowing what they were dealing with.  So you may surprise yourself - if you are diagnosed.  But don't assume the worst yet.  If the doctor mentioned it being a possible false positive, that's a definite possibility.
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Offline fishmanpa

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Re: What happens when it's real?
« Reply #5 on: September 03, 2014, 05:11:59 PM »
In all the time I've been frequenting anxiety boards, I've only seen a couple of cases where someone's fears actually became reality. I can tell you what one poster has done. She's dealing with it plain and simple, and guess what? Her anxiety has taken a back seat as she's totally focused on the task at hand which is getting better. In fact, I got a message from her today telling me despite being ill, she hasn't felt this good in years! Go figure! The real illness has alleviated the worry. While she's concerned, she's not freaking out or anything. In fact, she told me the not knowing was worse than knowing!

I've seen it a few times before when a real illness strikes. If it does, you really have no choice in the matter but to deal with it. And "if" that's the case, you'll deal with it as well.

Good luck and positive thoughts
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"Eat. Drink. Enjoy the work you do. Be thankful for the blessings in your life. Live. Love and seek out the things that bring your heart joy. The rest doesn't matter!."  King Solomon.

Offline cali4niay

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Re: What happens when it's real?
« Reply #6 on: September 03, 2014, 05:23:46 PM »
Meds have changed my ANA. They've gone from negative to positive, some to a speckled pattern, some indicating that I might have autoimmune pancreatitis...to then just POOF going away.

I think sometimes I have an inflammatory condition brought on by severe stress. I think during times like this, where my HA is through the roof, I would probably test positive for something that I would usually test negative for. When I'm not stressed, I'm completely fine. When my HA acts up, I seem to always get the same symptoms...

I think you'll be just fine.
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Offline Lunatone

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Re: What happens when it's real?
« Reply #7 on: September 03, 2014, 05:37:52 PM »
If it turns out you have a problem, you will spend some time freaking out. And after that you'll start to deal with it.

What else can you do?
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Offline sixpack

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Re: What happens when it's real?
« Reply #8 on: September 03, 2014, 05:42:15 PM »
If it turns out you have a problem, you will spend some time freaking out. And after that you'll start to deal with it.

What else can you do?


EXACTLY


if you have an auto-immune disease you will deal with it just like everyone else who gets a diagnosis does.

when my  eldest was 4 months old she was dx''d with a severe brain malformation.  It is a serious thing.  I was very upset about it but mostly I was all about,  "how do I help my child"



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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline Justsmilealready

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Re: What happens when it's real?
« Reply #9 on: September 03, 2014, 06:35:21 PM »
Thanks guys. Your perspectives are comforting. It's hard to see the forest for the trees!
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Offline Brick5711

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Re: What happens when it's real?
« Reply #10 on: September 03, 2014, 08:03:06 PM »
I feared cancer 100000000000000%. I was diagnosed with a carcinoid tumor in March. As much as i thought i would freak out, I really didn't. I researched some, but listened to my doctor more than anything. Do I have bad days? Absolutely. I didn't research what you might have, but just like me, you will it day by day, learn to adjust, learn the best treatment, and enjoy life, probably more so than when you worried every second about getting a disease,
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Offline Slangevar

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Re: What happens when it's real?
« Reply #11 on: September 03, 2014, 08:23:51 PM »
My former therapist had an autoimmune disease and she worked with me to control stress and anxiety, which can exacerbate them. I looked up your potential diagnosis, btw - it seems a large portion of people just go into spontaneous remission and never get sick again. So this may just be a blip.
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Tags: anxiety coping 
 

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