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I'm really stressed about +ANA and don't know what to do? plz give advice?

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Lupus
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heavenpeace
New Member
Joined : Aug 2014
Posts : 10
Posted 8/29/2014 3:59 PM (GMT -8)
Hello everyone!
I've been going through alot these past few years, but I'm still here.
I would like to share my story to see if it rings a bell with any of you.

At 20, i became very tired and started having shortness of breath. The shortness of breath became serious and I couldn't breathe one night and was rushed to the ER. I was then told I had hypothyroidism.
Things went down from there, I started having emotional issues (don't know if it was related or not) like crying, personality changes and irritable, memory issues and brain fog, weight gain, hair loss, dry skin and fatigue.
I was trying to find the right dosage and went to numerous of DRs with no relief.

At 22, I was found to have a high RA Factor, I saw two rheumatologist and they agreed I had a false positive. At the time my ANA was negative and all other test. Life went on, memory got worse and I was taken off of thyroid meds for 6 months and now its a year and DRs say I no longer have it. here's my recent TSH 2.370 Normal: 00.270 uIU/mL - 4.200 uIU/mL . After all this time, I still don't feel like myself.

Now, a month ago my ANA came back positive, still showing ra factor and high sed rate, crp is normal.
One minute my DR is telling me not to worry but telling me I should be alarmed and saying you have an autoimmune disease or bone disease. I've been out of school for two weeks because I can't deal. My family have no autoimmune diseases and I don't feel any different from when i started feeling bad at 20. The only thing I get is, what feels like cramps in my legs and my knees have sharp pains but that stopped. I'm so afraid that I don't know what to do. It's all i think about. I have absolutely no one to talk to and the more I look on the internet the more afraid I get. I can't run if its something but i don't know what to do. Any advice would be helpful. Thanks all the best of health.

SED RATE- 27 mm/hr (High)
Normal: 00 mm/hr - 20 mm/hr

C Reactive protein < <0.3 mg/dL

Normal: < 00.5 mg/dL

ANA- 1:320
RA FACTOR HIGH- can't remember result.
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Lynnwood
Forum Moderator
Joined : May 2005
Posts : 8105
Posted 8/29/2014 4:03 PM (GMT -8)
Do you have any symptoms currently? Or are you mainly worrying over the ANA & SED Rate numbers?

Lupus is diagnosed more from symptoms than numbers - follow the link below, "diagnosing lupus", to find the 11 main symptoms of Lupus - you need to have at least 4 of them to be diagnosed.

Are you seeing a rheumy, do you have a follow up appointment scheduled?

Just deal with life one day at a time - how you feel physically today should govern today's activities. Lupus is one of many diseases that can be greatly aggravated by stress and worry. Stay calm.
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heavenpeace
New Member
Joined : Aug 2014
Posts : 10
Posted 8/29/2014 6:19 PM (GMT -8)
Yes I'm worried about the test results and what they mean. My only symptoms are cramp like feelings in legs and arms, shooting pains in knees and fatigue. I see a rheumatologist in October. Don't the test means autoimmune? I understand the physical diagnosing but most of the time it means autoimmune disease right?
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Cassie1289
New Member
Joined : Aug 2014
Posts : 14
Posted 8/30/2014 1:25 PM (GMT -8)
There are several studies conducted in peer review journals that now are proving sero-negative autoimmune diseases.
They do not present with the same labs as in the past.
Cassie
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heavenpeace
New Member
Joined : Aug 2014
Posts : 10
Posted 8/30/2014 3:07 PM (GMT -8)
Cassie, I'm sorry I don't understand what your saying. Can you clarify?
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Bsime
Veteran Member
Joined : Apr 2006
Posts : 1351
Posted 8/31/2014 10:37 AM (GMT -8)
Focus on living your life. It seems that you might have something autoimmune developing and it might be lupus or something else. If you become symptomatic your doctor will start an appropriate treatment. Most AI diseases are treatable. IT is NOT unusual to have unclear labs and/or symptoms. The best result is they are false positive or never really develop symptoms. The worst is they do.

If you do have new symptoms or existing ones worsen do not ignore the changes and talk to your doctor.

Many of us have gone through long periods of time, sometimes years, with abnormal labs, some or even no symptoms before presenting with a diagnosable disease. I had low platelets (really low) and mild anemia for at least 15 years before the first clinical symptom appeared. Been in remission since 2006 but my labs are acting up again....but no symptoms. It is another wait and see game. If my labs (platelets and liver numbers) get crazy then I will start immunosuppressants again.

In the meantime I will live life normally until I no longer can. Sometimes there are just no answers.

Bill
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Greengal
Regular Member
Joined : Jan 2010
Posts : 66
Posted 8/31/2014 12:34 PM (GMT -8)
check out with neurologist for problems in legs and arms,ANA and sed rate is enough for docs to conclude but other biomarkers are there which they need to check .

keep hope don't give up!
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Lynnwood
Forum Moderator
Joined : May 2005
Posts : 8105
Posted 8/31/2014 2:27 PM (GMT -8)
ANA & Sed rate are *NOT* enough to confirm Lupus.
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Barbara Lee
Veteran Member
Joined : Sep 2003
Posts : 2889
Posted 9/1/2014 4:06 PM (GMT -8)
I'd recommend that you not worry about the ANA and Sed rate. My daughter who is 21 has had a positive ANA at 1:640 since she was 7 years old and doesn't have LUPUS. At times her Sed rate can be elevated but nothing again.

You can have a virus and have a positive ANA, I'm telling the truth here. Labs are not the only thing Doctors DX lupus with. You must symptoms also, w/o those you'll never get a DX or treatments, as there's nothing to treat.

I've have lupus since I was 23 years old. I'm now 49, it took my Doctors 13 years to finally say yes I have it and to start to treat it. I had a ton of symptoms, but not the labs to match in the beginning, and I suffered greatly because of not having the positive labs.

My advice to you is the same as my daughter, if you start to have symptoms go back to the Doctor and be looked at again. As long as you're not having symptoms don't sweat it and move on with your life. I hope that you are a bit reassured by the fact my kid has been walking around with a pretty ANA for sometime and is fine.

Let us know how things turn out.

Hugs,
Barbara
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heavenpeace
New Member
Joined : Aug 2014
Posts : 10
Posted 9/3/2014 11:37 AM (GMT -8)
Thanks everyone. And @BarbaraLee you gave me so much hope. I'm trying to think positive and stop worrying. But at the same time that "what if" is really scary. And the Doctor i'm seeing isn't making it any better she's basically saying yeah you have it but I don't know maybe lupus or bone disease. I feel healthy, just tired alot. But I'm working two jobs, help out with my niece and I'm in school so i don't know. I just have memory problems, depression and cramps like muscle pains.
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