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Old 06-24-2009, 10:45 AM   #1
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Unhappy Sick, confused, and desperate. Elevated ANA? Please help!

Hi all...

I read the sticky regarding diagnosing Lupus, but I am desperately seeking answers... Any help is appreciated.

I am a 24 year old woman, not overweight. For the last year, I have been experiencing increasingly worse nausea (I have it EVERYDAY) and vomiting. I've been admitted to the ER with severe chest pain, only to be released with a diagnosis of pluerisy. I was diagnosed with mild anemia (B12 and Iron)... and I have had recurring UTI's (about 1x/month). I've been super tired, and lacking my normal energy.

I recently had a blood test that came back with a high ANA (I don't know what that is). Doctor said it could indicate Lupus, but that it doesn't always mean lupus, so I was probably fine and he wasn't going to check any further. He says that I appear to be a healthy young woman, so he doesn't understand why I present with these symptoms...

What is wrong with me?? Should I seek further care for Lupus, or search elsewhere?

 
Old 06-24-2009, 06:34 PM   #2
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Re: Sick, confused, and desperate. Elevated ANA? Please help!

Halielz, hi & welcome. You can't feel good that your dr. chose to look no further! His saying you're "probaby fine"---with the problems you describe---makes no sense whatsoever to me. And I mean NONE!

ANA stands for "antinuclear antibodies". This is a threshold test that is, as your dr. suggested, positive in a variety of diseases & conditions (lupus, rheumatoid arthritis, myositis, scleroderma, Sjogren's syndrome, etc. Also in certain blood disorders. Etc.) Sometimes ANA is low-positive due to a passing virus, to aging, or to a family tendency. Thing is, when you say it's VERY HIGH, I don't think your dr. has the right to pass it off. He should be rolling up his sleeves!

If ANA is positive *and* if a patient has symptoms, a dr. usually orders quite a number of more specific specialized blood tests, to start to narrow down possibilities, also urinalysis. If lupus is a possibility, what they're looking for are autoantibodies that your immune system is mistakenly producing; these autoantibodies do damage to your own cells. Lupus & similar autoimmunes aren't easy to diagnose: it can take time, multiple visits, repeat bloodwork, etc. But first you need a MOTIVATED doctor!

In your shoes, I'd (1) get copies of all recent tests. (2) Try to get current dr. to do further tests; if no go, look for new dr. A *rheumatologist* is the specialist best-versed in lupus & close conditions. (3) Borrow library books on lupus from your local library. Dr. Daniel Wallace is a top author; another is Dr. Robert Lahita. (I'm not saying that you have lupus; only a dr. could say. But these authors do explain ANA, the more specific tests typically done when ANA is high, symptoms of lupus & similar autoimmunes, etc.)

I'll stop here to let you catch your breath... I'm really glad you found us & hope you keep posting. Please keep pressing for more action, OK? Meanwhile, sending my best wishes to you, bye for now, Vee

Last edited by VeeJ; 06-24-2009 at 06:36 PM. Reason: rypo

 
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Old 06-25-2009, 10:12 AM   #3
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Re: Sick, confused, and desperate. Elevated ANA? Please help!

Hi Vee... thank you so much for your reply!! I am beginning to feel crazy, because I have all these weird symptoms, but no reason why. They keep treating the effects, but not the cause - supplements for the iron/B12, medicine to stop the nausea.

I will need a referral to get to a rheumatologist... and if my doctor thinks nothing is wrong and we need to wait for more symptoms to crop up, I am not so sure I can get that referral. I believe the problem is that I am limited on funds and have no medical insurance.

Are those the only problems associated with high ANA? My mother has a gamut of health problems, MS/thyroid/diabetes... and my grandma died from Parkinson's.

Thank you again for your reply...

 
Old 06-25-2009, 02:41 PM   #4
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Re: Sick, confused, and desperate. Elevated ANA? Please help!

Hi, again. Books & articles suggest that autoimmunes can run in families. You're not "guaranteed" to get one if first-degree relatives do, but your chaces are somewhat higher. And it doesn't have to be the *same* autoimmune. My family is a good example. My sister has a thyroid condition & asthma, as did our maternal grandmother; my mom had a blood clotting disorder; I have lupus; cousins have diabetes.

Some of us were "talking" the other day about different kinds of anemia. Do your supplements actually help? If not, has your dr. looked further for the root cause? Do you take NSAID's or aspirin? (Curious because they can cause stomach bleeds.)

Has your nausea & vomiting been going on a full year? What tests were run?

Please keep pushing your doctor! Take someone along with you to appointments, if possible, so you have a second set of ears & present a united front. It's awful that he thinks you "appear" normal, when you so clearly feel anything but normal. I feel awful for you & hope you can find better answers soon. All my best, Vee

 
Old 06-26-2009, 09:49 AM   #5
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Re: Sick, confused, and desperate. Elevated ANA? Please help!

Hi again, Vee!

Your family sounds like mine. Blood clotting problems are auto immune related, too? That is my mom. And my baby brother has severe asthma... also AI?? I had no idea.

No, my supplements do not help much... My levels hover around low levels, but not significantly low. The docs wanted to move me to a more meat rich diet, but my last blood test my total cholesterol came back sky high (273). So, I'm sticking to a more veggie diet (my preferred).

NSAIDS are with me at all times. I have arthritis in my neck (random, I know) and I get terrible migraines, so I carry Motrin or Advil in my purse. I probably go through a bottle every 3 months. What would the stomach bleed do? Is that my problem?

The nausea has been going on a little over a year. In April 2008, I was diagnosed with viral meningitis and mono (it was hell), and shortly after that I began feeling really run down and nauseous every day. Recently, it's been getting worse - to the point of throwing up multiple times every day. Then I get super dizzy, and usually pass out. I hate it.

The tests run so far were:
Holter monitor for my heart for 24 hours. Came back normal, except my heart rate was usually over 100 beats.

Large gamut of blood tests... everything but the ANA, B12/Iron, cholesterol came back normal. My glucose was a little higher than I would like to see at 95, but the doc didn't seemed concerned.

Kidney and heart ultrasounds - normal (what a relief that was!).

I was supposed to get an MRI for my head, too. Checking for MS lesions and tumors, he said. But my lack of insurance is detrimental on the pricey MRI.

Really anxious to hear your reply... Thank you again!

Last edited by halielz; 06-26-2009 at 09:54 AM. Reason: Added testing information

 
Old 06-26-2009, 10:27 AM   #6
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Re: Sick, confused, and desperate. Elevated ANA? Please help!

Hi, again. If you can get to your local library, borrow that lupus hardcover by Dr. Daniel Wallace. It has a LONG list of *more specific* blood tests typically done when ANA is elevated. The criteria in the "sticky post" only shows several: anti-DNA, anti-Sm, lupus anticoagulant, false-positive syphilis, and antiphospholipid---because these are considered the most "specific" to lupus &/or antiphospholipid syndrome (APS).

But the thing is, there are other autoantibodies also seen in lupus, like anti-Ro, anti-La, rheumatoid factor, plus quite a few more. (I'm an example: I had only anti-Ro, plus a lupus-specific rash + various other chronic problems.)

Also, the book discusses quite a few "close cousins" to lupus that also feature high ANA, and cites specific tests/procedures to check for those other conditions.

Interesting that your mom has blood clotting problems. Did you read the "sticky post" on APS? This one is seen in a fair % of lupus patients, and it can also occur "standalone". (I assume there are other conditions that cause blood clotting problems, other than this APS.)

Beyond high ANA, this daily throwing up---wow, just not right! Did your dr. hazard any speculations about the cause? Suggest any GI (etc.) tests? I know my mom battled awful nausea before her gallbladder finally "announced" itself with terrible pain---but I don't know how many causes are possible. I hope your dr. is at least conferring with a gastroenterologist for ideas! Start asking & don't let up, OK? I'll try to post more later this weekend.

I hope others here chip in with suggestions, like questions to ask, etc. Thinking of you, Vee

 
Old 06-26-2009, 05:20 PM   #7
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Re: Sick, confused, and desperate. Elevated ANA? Please help!

Hi Vee, thank you again for your help... it is priceless.

Went to the library today, and checked out a few books on Lupus and AI diseases. The illness most like my symptoms was Addison's disease, which accounted for my passing out issues... which gets a little dicey. I copied some pages, which I am bringing to my next doc visit.

Just read the APS sticky, and my mom also suffered from several TIAs... the first one was super scary.

Doc hasn't speculated on nausea, seemed more concerned with the passing out which is why he checked my heart. He seems to think that women in general feel nauseous a lot, because we don't typically eat right. I eat fine, and I would eat better if I didn't always feel like puking!

 
Old 06-27-2009, 02:14 AM   #8
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Re: Sick, confused, and desperate. Elevated ANA? Please help!

Halielz, wow, you hadn't mentioned that you pass out. Your bad year is sounding worse! I'm only a *dumb patient*, but when you mentioned Addison's, for some reason my mind also went to thyroid. Hmmm... You could ask your dr., "Which conditions in endocrinology, if any, might (a) feature my symptoms, and also (b) include elevated ANA?" While I *think* positive ANA is possible in both Addison's & Hashimoto's thyroiditis, only a real dr. is qualified to say & whether your symptoms suggest either.

Your last post triggered memories of working with a woman who had nasty GI problems, nausea, body temp fluctuations, etc. She'd had many tests. Only when she turned *hypothyroid* was it clear that the earlier phase had been her *hyperthyroid* phase. What went wrong: thyroid tests are "add-ons" which her drs. hadn't ever called for.

'Twill be interesting to see how dr. reacts to photocopied pages! The local dr. who helped me the most was open to article & pics I brought him: didn't take offense, refused to quit, and kept his mind open to where the known facts led. He remains my ideal of how doctors should think & act. So here's hoping for clarity for you, soon! Keep us posted, OK? All my best, V.

 
Old 06-27-2009, 11:08 AM   #9
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Re: Sick, confused, and desperate. Elevated ANA? Please help!

Hiya Vee,

Yeah, the passing out is rarer out all of my symptoms, but it's happened about 10 times in the past year... which is enough for me!

I've had thyroid levels checked in my blood tests... they were all normal. Which only makes this more confusing. I have noticed, though... that I do have that butterfly marking. It's so very faint, and I usually run warm anyway, so I thought I was just always "blushing" and flushed.

Is that only significant to Lupus??

 
Old 06-28-2009, 07:16 AM   #10
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Re: Sick, confused, and desperate. Elevated ANA? Please help!

Good morning. I think the butetrfly is pretty much viewed as unique to SLE, but only a dr. could know whether it's really a lupus rash---and often proof can only be had by skin biopsy. If it comes & goes, you could have someone take a picture; while a pic can't prove anything for sure, it might help your dr's thinking.

Another thought: I *think* ANA possibly elevates in "pernicious anemia". I saw last week a TV show w/woman in search of a Dx; it turned out she has pernicious anemia. She lacks something called "intrinsic factor" & will need B-12 shots for the rest of her life. She does NOT have lupus. (There are other forms of anemia common in lupus.)

Anyway, I bet your list of questions is expanding quickly. I hope you get a better dialogue going ASAP with your dr., or with some new dr. Drop us updates when you can, OK? Meanwhile, thinking of you, Vee

 
Old 06-28-2009, 11:32 AM   #11
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Re: Sick, confused, and desperate. Elevated ANA? Please help!

Thank you so much, Vee! I will drop an update as soon as I get one. You've really helped me...!

 
Old 11-15-2009, 09:14 AM   #12
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Re: Sick, confused, and desperate. Elevated ANA? Please help!

Quote:
Originally Posted by halielz View Post
Hi all...

I read the sticky regarding diagnosing Lupus, but I am desperately seeking answers... Any help is appreciated.

I am a 24 year old woman, not overweight. For the last year, I have been experiencing increasingly worse nausea (I have it EVERYDAY) and vomiting. I've been admitted to the ER with severe chest pain, only to be released with a diagnosis of pluerisy. I was diagnosed with mild anemia (B12 and Iron)... and I have had recurring UTI's (about 1x/month). I've been super tired, and lacking my normal energy.

I recently had a blood test that came back with a high ANA (I don't know what that is). Doctor said it could indicate Lupus, but that it doesn't always mean lupus, so I was probably fine and he wasn't going to check any further. He says that I appear to be a healthy young woman, so he doesn't understand why I present with these symptoms...

What is wrong with me?? Should I seek further care for Lupus, or search elsewhere?
I had this same issue and was diagnosed with Sjorgren's Syndrome. It is an autoimmune disorder. However the moment my ANA was elevated I was sent to a Rheumatologist. I have taken Plaquenil which is supposed to reduce the ANA and help the body not fight itself.

 
Old 11-15-2009, 08:33 PM   #13
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Re: Sick, confused, and desperate. Elevated ANA? Please help!

Twinters, just want to say welcome. I'm an anti-Ro too, but Dx'ed with lupus but not Sjogren's. Are you doing better on Plaquenil? Hope so! Take good care, Vee

 
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