My 17 year old child had a positive ANA, lots of symptoms.

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OWLS
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Date Joined Mar 2010
Total Posts : 5
   Posted 3/21/2010 10:16 PM (GMT -7)   
Hello I just discovered this web site as I was searching for answers. My 17 year old daughter whom just received a positive ANA (Friday) was complaining of a headache so of course I could not sleep and I find myself here.

I am very scared and confused. We don't know if she has Lupus but know that it is a possibility. We are waiting to see an adolescent neurologist as well as an adolescent rheumotoidologist (sorry do not know how to spell that). Her symptoms just keep increasing and I am hypersensitive to every new ailment now.

Her struggle began about 3 years ago when she had her first "black out" very short about 3 seconds she just said that everything turned black for a few secs. Then the following year she started complaining of dizziness and then she would be "sick" as if she had a terrible cold or flu. Not really any symptoms other than felt like crap. She would miss school. I feel bad looking back because we had just figured that this is how she got sick , you know like a cold or whatever and she had to learn how to deal with it. Then last year it began again and the symptoms just seemed to last longer: dizziness, at least 1 "blackout" and feeling terrible and very tired, never a fever.. Went back to the Dr. even took her school records to show how much she had missed from school (Those records didn't even count the days that we made her go to school), he just said that she was normal and that is just the way she got sick. I took her to her a naturpath thinking I needed to build up her immune system. Well she wasn't much help either. This year I started giving her colloidal silver to help build her immune system, I believe that it was working, she started to get "sick" once and bounced back. Then she had surgery in February for a ruptured ovarian cyst. about 3 weeks later that seems to be when all "heck" broke loose. Her previous years symptoms were back in full force with added symptoms, increased dizziness, lots of night twitches, waking up dizzy, feeling very tired.. Went to a different Dr. who felt that she might be hypoglycemic so we monitored that, no problems there ( I knew there wasn't) and he also had her wear a heart monitor for 24 hours because she had complained of her heart pounding. Of course it was negative. There is a button on the monitor that she was able to push every time she felt something or had an incident. Well she had to push it at least a dozen times, even in the middle of the night due to dizziness. The Dr. mentioned this because he had thought that maybe the button had actually been accidently pushed. Well he at least feels her symptoms are not heart related. Her symptoms are not going away after a week, I call again and we finally see a different Dr. who orders an ANA test. So here we are with a positive ANA test...This weekend her dizziness has gone away, she is still very tired and now a new symptom, headaches. She describes them as not your typical headache, more like her head just hurts. I also forgot to add that her legs and arms hurt.

I realize this may not be Lupus, but there is definitely something going on and things have escalated. I am just glad that we are finally being listened to by a DR. I am just very concerned and right now the not knowing of what this could be is hard. The title autoimmune is so vast. I also realize my post is very long. Really if anything I had a chance to vent so thank you for taking the time to read my post.

Take care
OWLS

Mom21girl
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Date Joined Mar 2010
Total Posts : 3
   Posted 3/22/2010 4:25 AM (GMT -7)   
OWLS,

I will be very interested in what her journey. It sounds similar to the last few months with my daughter. A year ago (as she turned 12) she was diagnosed with Raynauds. By May she went on meds from the itching & burning sensations. The discoloration is ALWAYS there. She just has learned to live with the comments from her classmates.

Last fall she came down with what we thought was the flu. In fact, we were one of those schools that closed down for a couple of days because of the outbreak. Since then shes missed more than 3 weeks of school & like you, this doesn't include days we sent her and she stayed feeling crappy.

The symptoms seem to kept piling up. BTW - She started with the dizzy/lightheaded issues in the summer and the dr. dx'ed as side effect to her meds. Drink more water & salt everthing she wants was the result. We now have added fatigue, sore joints & muscles, zoning out/staring spells, rash on her face, headaches, cognitive issues a plenty and probably more I'm forgetting at the moment. Oh yeah - hair loss...

Her ANA was positive back with the initial Raynauds dx. So her rheumie brought up watching for Lupus a year ago. So fast forward to the last few weeks: did many "Lupus panel" blood tests which came back within normal/acceptable ranges , EEG - abnormal, possible seizure activity in left temporal lobe, Cognitive Screen/Eval - showed problems going on, MRI/MRA normal. At the time of the apt. the rheumie mumbled to us she's afraid it's lupus. After the blood work came back - "she's a puzzle."

The neurologist we saw threw out the abnormal EEG since the MRI/MRA came back normal & dx'ed the headaches as migraines. So the next visit with rheumie the dx came back as Chronic Fatigue Syndrome. Basically, because no blood work is showing damage to her body, we can't diagnose something...
 
Best wishes with trying to figure it out for her.  That's always the most frustrating part I think.  If I at least know what's going on, then I can at least go in a single direction.  Auto immune issues is pretty vast and encompassing to keep trying to figure this all out.

Post Edited (Mom21girl) : 3/22/2010 5:28:28 AM (GMT-6)


OWLS
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Date Joined Mar 2010
Total Posts : 5
   Posted 3/22/2010 6:10 AM (GMT -7)   
Mom21girl

Thank you for your reply.
Our situations really do sound familiar. How frustrating for you and your family to finally think you have a "result" only to find out maybe not. I hope that doesn't happen too for us, but my gut tells me it might.

You know the one thing my daughter does not have is the rash. She does have a little darker skin so maybe this is why..

I also forgot that my daughter is starting to become sensitive to the sun. I thought the dizzy stuff had subsided, but she woke up this morning dizzy. Well I will keep you posted on our journey, as I hope to hear from you again too, maybe we can help each other out through this.

thank you again and take care.

AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 3/22/2010 11:04 AM (GMT -7)   
if her ANA was positive they almost always have a ratio number and pattern... do you know her number and pattern? m,y number was 1:640 with a speckled pattern..
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. PRES ,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: cellcept, Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


OWLS
New Member


Date Joined Mar 2010
Total Posts : 5
   Posted 3/22/2010 5:56 PM (GMT -7)   
Hi
I do not know that number or anything else. That is good to know, I will call the clinic tomorrow and ask for that information and then post it here. Thank you
OWLS

AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 3/22/2010 8:20 PM (GMT -7)   
hey your so welcome the number is good to know if they didnt run an ana titer I would ask for one..they may have just ran an ana... i would get one it will tell you alot.. mine is speckled ...but here is something helpful

The cells are also examined to determine the pattern of the nucleus. Following is a chart indicating which pattern is associated with which disease or syndrome:

1. Rim Pattern
A. Systemic Lupus Erythematosus (Most Specific)

2. Homogenous Pattern
A. Systemic Lupus Erythematosus (Very specific)
B. Tests for Further evaluation
1. Anti-dsDNA
2. Anti-ssDNA
3. Anti-Smith

3. Speckled Pattern
A. Most common, least specific
B. Disorders Indicated
1. Systemic Lupus Erythematosus
2. Mixed Connective Tissue Disease
3. Scleroderma
4. Sjogren's Syndrome
C. Tests for Further evaluation
1. Smith Antibody (Anti-Smith)
2. Ribonucleoprotein Antibody (Anti-RNP)
3. Scl-70 kD kinetochore (Anti-Topoisomerase I)
4. Anti-La (Anti-SSB)

4. Nucleolar Pattern
A. Disorders
1. Scleroderma
2. CREST syndrome
B. Further evaluation
1. Scl-70 kD kinetochore (Anti-Topoisomerase I)
2. PM-1

5. Diffuse Pattern
A. Non-specific pattern

6. Centromere Pattern
A. Seen in PSS with CREST syndrome
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. PRES ,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: cellcept, Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 3/22/2010 8:23 PM (GMT -7)   
forgot to ask how is her blood pressure with the headaches.. i bought a blood pressure machine and walgreens and everytime i get a headache i check it... with headaches it might be time for a neurologist..
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. PRES ,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: cellcept, Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


love&peaceonearth
New Member


Date Joined Mar 2010
Total Posts : 1
   Posted 3/23/2010 5:55 PM (GMT -7)   
hi i went to the dr. a few years ago because i had iritis and it was very hard to cure. the dr said it normally doesn't take long for this eye infection to heal. Well it took about a year for mines to go away, well during the time while having the iritis the dr told me to have my ana check out and that's what i did and my numbers at that time was1:5120 and they said that was high, other than the iritis i was having ocassional joint pains so the dr gave me something for the joint pains and after a year the iritis finally cleared up this was 3yrs ago. Now i had the ana test done again and my numbers are 2560 this is what the dr told me, he said all of my organs are fine. Can anyone explain to me what the numbers represrent cause i am clueless and i'm not experincing any new pain so that's good.

OWLS
New Member


Date Joined Mar 2010
Total Posts : 5
   Posted 3/24/2010 3:17 PM (GMT -7)   
ok, her ANA was 1:40/Homogeneous.
Her headaches are worse. We are still waiting on the Rheume, but do have an appointment with the neurologist on the 29th. Thank you AmyTX for so much information.

I really don't know what the ratio means. Does it mean it is high or low?

Thank you
OWLS

AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 3/24/2010 7:35 PM (GMT -7)   
a low positive is 1:80 anything below that is negative so im assuming you wrote it down wrong.. have you thought about taking her to an er..they can medicate her there..Homogeneous total nuclear fluorescence due to antibody directed against nucleoprotein. Common in SLE (lupus). if her headaches get to severe dont wait around if there that bad there could be a reason.. i almost waited to long on a headache one time.. until i checked my blood pressure and it was high.. keep us posted
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Anxiety./panic disorder, GERD, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. PRES ,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: cellcept, Plaquenil,Prednisone 10 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg, pantaprozole and carafate


OWLS
New Member


Date Joined Mar 2010
Total Posts : 5
   Posted 3/25/2010 6:18 AM (GMT -7)   
I am pretty positive that the Dr. told me 1:40. What a roller coaster. Now I am completely confused. So what could the Dr. have gotten out of that to be positive? He definitely told me 1:40 and homogenous.

I live in a rural area, we actually are traveling to a neighboring state for the neurologist. I have several people strongly suggesting that I take her to the Mayo clinic, even offering to take us themselves if need be. We are probably 1200 miles away from the one in Arizona.

Still have not heard from the Rheumi yet for the appointment. Maybe that is why I have not heard from them yet, they might be perplexed as to why she was referred to them..Thank you again for your information..I will definitely keep you posted

zab
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/1/2010 7:33 PM (GMT -7)   
I am pretty interested in your daughter's outcome. It sounds similiar to my 14 year old daughter. She suffers from occasional headaches. After a dermatologist sending her to a rhumatologist for nodules on her toes. Several blood tests were ordered. The ANA was positive 1:64 with a speckled pattern and her white blood cell count was somewhat low. All of the additional tests were negative and she has no other symptoms. Looking backing sometimes she has some hand swelling. Because all of the other test are negative does I do not know what to do. It was suggested that I take her to a pediatric rhumatologists. But that was before the additional test were ordered. Because our situations sound familiar please let me know what your doctors says.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 4/1/2010 11:18 PM (GMT -7)   
Labs can have different thresholds. It is entirely possible that a particular lab and/or a particular doctor would consider 1:40 to be positive. The numbers go up, 1:40 would be a really low positive, 1:80 positive, 1:2400 quite high...sometimes the numbers don't seem to coordinate with symptom activity at all!! Lupus is diagnosed by a combination of symptoms and bloodwork, neither the symptoms nor the bloodwork are definitive by themselves.

The most important thing with autoimmune disease is that it is treated....there are many kinds of autoimmune diseases and they can overlap and be very difficult to diagnose. I would continue to pursue more information until the symptoms are being controlled. While you may get to a rheumotologist by way of a neurologist, it is important to keep notes of what symptoms your children are having, when they are having them, what the 24 hours before were like, that sort of thing. The more information you can provide the more likely they can figure out what's happening.

If possible, I'd definitely look for a pediatric rheumy -- they just know more about what is or isn't normal for growing teenagers -- something an adult rheumy, no matter how good a dr s/he is, just won't be as familiar with.

I hope you all find answers soon, and everyone feels better.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


zab
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/2/2010 12:25 AM (GMT -7)   
Thank you.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 4/2/2010 5:52 PM (GMT -7)   
The immune system in people with lupus goes out of control and starts to attack parts of the body. Immunosuppressants such as prednisone are given to patients to order to quiet the immune system so that it will stop it's attack. For that reason, you don't want to give your daughter anything that will strengthen the immune system without talking to a rheumatologist first. Naturopaths can be very good, but it is my belief that lupus patients should see a trained rheumatologist.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lunesta, cymbalta, vitamin D, Calcium, Multi Vit.


kberaun
New Member


Date Joined Jul 2014
Total Posts : 7
   Posted 7/27/2014 5:32 AM (GMT -7)   
JUst FYI, our labs at IU hospital say that the
ANA Ab Titer

Normal: <1:40

mine was 1:80  I dont know what I am up against yet


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/27/2014 10:28 PM (GMT -7)   
Hello kberaun:

Welcome to the lupus forum. You have posted on a very old thread from 2010. A lot of the folks that responded to this thread are no longer here.

If you could start a new post giving us an update on your symptoms we may be able to help you with any questions you may have. By looking at your test results I can tell you that your result of 1:80 is consider just barely positive for the ANA.

The ANA doubles the higher the result the stronger the ANA is. My daughter has had a positive ANA of 1:640 since she was 7, she's now 21 and still has not developed lupus. She some symptoms but nothing that is enough to treat at this time.

Looking forward to seeing your thread, please ask away on questions and please give a list of symptoms.

Thanks and I'll look for your thread.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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