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Old 03-05-2004, 09:21 AM   #1
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lovemythreeguys2002 HB User
Unhappy ANA of 1:320, what is going on with me?

Hi...last year, I suddenly began having joint and muscle pain. My dr ran tons of tests, including a full Lupus panal with all the antibodies. My ANA was ran twice (2 months apart) and both times were 1:80, speckled pattern. Then I found out I have thyroid antibodies and hypothyroidism. I also learned this can cause joint/muscle pain and a positive ANA(due to the hypothyroidism being auto immune).

I started my thyroid meds and felt much better. Then this last Nov, I started feeling worse again...I am on Armour thyroid and my numbers are ideal (Tsh of .12)......I started feeling that something else was still wrong.

I found a rheumy and went to him, he rechecked my ANA and it is now 1:320. My sed rate is 33. He does not feel it's Lupus, due to all my other blood work being fine. He says I have 'connective tissue disease", and doesn't like to toss out the Lupus label unless he is really sure (due to the problems it can cause with insurance). I really like this doctor.

He started me on Vioxx and said I can try Plaquenil if need be.

My head is spinning, I have been doing tons of reading about ANA and last night I found an artice about false positives, which I knew could happen in low titers, but this said 3% even have as high as 1:320 as I do.

Any thoughts are appreciated....I just don't know what to think......thanks
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Old 03-07-2004, 12:26 AM   #2
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Re: ANA of 1:320, what is going on with me?

[QUOTE=lovemythreeguys2002]Hi...last year, I suddenly began having joint and muscle pain. My dr ran tons of tests, including a full Lupus panal with all the antibodies. My ANA was ran twice (2 months apart) and both times were 1:80, speckled pattern. Then I found out I have thyroid antibodies and hypothyroidism. I also learned this can cause joint/muscle pain and a positive ANA(due to the hypothyroidism being auto immune).

I started my thyroid meds and felt much better. Then this last Nov, I started feeling worse again...I am on Armour thyroid and my numbers are ideal (Tsh of .12)......I started feeling that something else was still wrong.

I found a rheumy and went to him, he rechecked my ANA and it is now 1:320. My sed rate is 33. He does not feel it's Lupus, due to all my other blood work being fine. He says I have 'connective tissue disease", and doesn't like to toss out the Lupus label unless he is really sure (due to the problems it can cause with insurance). I really like this doctor.

He started me on Vioxx and said I can try Plaquenil if need be.

My head is spinning, I have been doing tons of reading about ANA and last night I found an artice about false positives, which I knew could happen in low titers, but this said 3% even have as high as 1:320 as I do.

Any thoughts are appreciated....I just don't know what to think......thanks[/

You could have Lupus but no need to push for that diagnoses. You will get the same treatment for connective tissue disease. The Dr is right once
Lupus is on your record it can cause insurance problems. It can make it almost impossible to change insurance. Sounds like you have a caring Dr
who will really look out for you. Better keep him! Good luck to you.

 
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Old 03-08-2004, 04:26 PM   #3
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Re: ANA of 1:320, what is going on with me?

I agree that you could indeed have Lupus. Your ANA is quite elevated (normal is below 1:39) so I think it would be best to see a Rheumy that specializes in treating Lupus patients. The Rheumy that you saw is obviously not very good, a good one would recognize that you have something going on here! Your ANA is probably NOT false positive, because it is so elevated now. The speckled pattern ANA is indicative of Lupus activity. Any disease process that is autoimmune can go with Lupus, often we have 3 or 4 different autoimmune things going on at once!

Connective Tissue Disease is just as much of a label as Lupus! If I was your GP, I would be concerned with your elevated ESR and ANA! Anyway- Try and see if you can get a second opinion with a Rheumy that treats Lupus patients. I had to travel to London England to see one after 10 years and several Rheumatologists that didn't! It took him half of an hour to diagnose me! Take care and keep in touch!

~Angelic

 
Old 03-08-2004, 04:39 PM   #4
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Re: ANA of 1:320, what is going on with me?

The Rheumy that you saw is obviously not very good, a good one would recognize that you have something going on here! >>>

He did recognize, that is why he DXed me with a connective tissue disease and will re-do labs every 4 months to watch me. He doesn't DX Lupus until he is absolutely sure due to insurance problems, like never being able to get life insurance etc....

I have done tons of reading and the speckled pattern can be for many auto immune diseases, the rim and periferal (sp?) are more inclined to be Lupus....I would post links, but I can't...

I also only have 2 of the diagnostic criteria....I just wish my body would hurry up and decide what it wants to do...lol
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Old 03-08-2004, 05:03 PM   #5
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Re: ANA of 1:320, what is going on with me?

Hi again,

I misread what you said. I didn't realize it was the Rheumy that said that you had Connective Tissue Disease. I have a medical text book here that I refer to, and I will quote what it says about the Speckled pattern: "are seen mostly in SLE but can occur in other autoimmune diseases".

Connective Tissue Disease is an umbrella that includes Lupus. There are other diseases under that umbrella such as Scleroderma, vasculitis, Mytosis etc. That just means that you have probable Lupus but he won't say.. and I understand why not if it is for insurance purposes. I mean, you have the blood work that is positive for Lupus, and a few of the symptoms.. but I have more to say about that too! LOL

The Symptoms of Lupus do NOT have to occur at all times. They can be past, or present. If you have had sun sensitivity in the past, joint problems in the past, hair loss in the past etc then it correlates. Also, your Rheumy could test you for Sjogren's Syndrome, which goes along with Lupus very often. Sjogren's does not always show up in the blood but there is a blot test that your Rheumy/GP or Optometrist can do that is simple and inexpensive. It involves them putting a small piece of litmus paper into the lower eyelid and measuring the eye moisture for a few minutes. If your eyes read dry on that paper, you have Sjogrens. It's that simple!

You have to be really careful about the internet for information. I use some sites for information, but I have come across MANY sites that have false information and are misleading. Medical Text books and books you can buy in stores are the best sources for information. And the best thing to do too, is ask questions.. which you are doing!

I think that you know that a diagnosis of Lupus is a 4/11 criteria that is in this forum at the top. Did you check out the "Alternative Criteria" underneath that? If not, check it and see how many of those you fit into. I always tell people to keep in mind that the symptoms can occur over time and not all the same time. I am glad that your Rheumy is considering Connective Tissue Disease. He didn't say Mixed Connective Tissue Disease did he? Take care and talk to you soon!!

~Angelic

 
Old 03-09-2004, 08:44 PM   #6
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Re: ANA of 1:320, what is going on with me?

He didn't say Mixed Connective Tissue Disease did he?>>>>

The first time I saw him, he said he felt that I had Mixed Connective Tissue Disease, then once my new labs came back and he went over everything he said that I have Connective Tissue Disease....

Is there something bad about 'mixed'?
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Old 03-10-2004, 04:42 PM   #7
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Re: ANA of 1:320, what is going on with me?

What is ANA 1:160 homogenus

Last edited by californiasunflower; 04-28-2004 at 12:00 PM.

 
Old 03-10-2004, 04:47 PM   #8
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Re: ANA of 1:320, what is going on with me?

Hey lovemythreeguys, we're similar in that our doctors think we have connective tissue and thyroid. I don't know if I have hashimoto but the rheumy thought I had an autoimmune thyroiditis--and I don't know what that could be other than the hashi.... Does anybody know?

The major symptom that started my workup was vision, and still the cause is unknown. Would like to find it to get eye resolved and get treatment.

Your post was really helpful. Thanks for sharing! And always, thanks to our experts who provide information for us!

 
Old 03-10-2004, 05:13 PM   #9
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Re: ANA of 1:320, what is going on with me?

I don't know if I have hashimoto but the rheumy thought I had an autoimmune thyroiditis--and I don't know what that could be other than the hashi.... Does anybody know?>>>

The only other thng besides hashis would be graves (hyPERthyroid). Are you hyPER or hyPO?
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Old 03-10-2004, 08:47 PM   #10
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Re: ANA of 1:320, what is going on with me?

Ok....here are some more questions

Last year, I had a full lupus antibody panel done, all was negative except for the ANA and the thyroid. Should I have this done again and can you have Lupus even though the other antibodies were negative?

I never have a fever, I am usually cold, I think due to my thyroid, does this rule me out automatically? my temp is usually in the 97 range.

I am wondering about Pluerisy. Off and on for the last few years, I have gotten a pain that feels like a muscle strain...it's behind my breast, just to the left of my cleavage, my regular dr thought it might just be costochondritis, but never really checked it out. I had some heart issues checked (all was fine, except for a few pvc's)and had a chest xray which was fine..would pluerisy show up then or only if active at that time?

Thanks
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Old 03-10-2004, 08:48 PM   #11
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Re: ANA of 1:320, what is going on with me?

Hey california!

I still stand by the fact that you have APS! Negative or Positive Blood work doesn't matter, you have the symptoms. THere is Sero-negative APS (in the absence of bloods being positive). I wish I could diagnose and treat you LOL Take care you guys

~Luv, Angelic XO

 
Old 03-11-2004, 11:00 AM   #12
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Re: ANA of 1:320, what is going on with me?

Hi Lovemy3guys!

Gosh, I can't believe how similar we are. I too am usually 97 temp. Also had chest xray/EKG/Carotid sonogram. All negative. After tests, I started thyroid med, & I've been wheezing. ??

I agree, there's only two kinds of autoimmune thyroid: graves or hashimoto. I know it can't be graves, and as I recall, I didn't see where I fit in the hashi....based on what I read. So that is why I am wondering.
I'm hypo.

 
Old 03-11-2004, 11:03 AM   #13
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Re: ANA of 1:320, what is going on with me?

I didn't see where I fit in the hashi....based on what I read. So that is why I am wondering.
I'm hypo.>>>>>

If you are hypo, the most likely cause is hashimotos, why is it that you feel you don't have hashis? Did they find TPO antibodies (thyroid)?
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Old 03-11-2004, 11:06 AM   #14
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Re: ANA of 1:320, what is going on with me?

Hey Angelic! I see the doc next month so will bring up the sero-negative APS.
What a great idea for you to be a medical consultant and expert on autoimmune conditions. There would be a great asset to the medical community and patients alike!

Hugs back,

Cal Sun

 
Old 03-11-2004, 11:36 AM   #15
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Re: ANA of 1:320, what is going on with me?

I read this today and this fits me exactly, but I am not being treated with steroids, should I be concerned?


>>>>>>>>>>>Muscle pains/aches are called myalgias.
In lupus, myalgias are most frequently located in the muscles between the elbow & neck, and the knee & hip, myalgias are rarely associated with weakness.
Inflammation of the muscles (myositis) is observed in approx 15% of SLE patients.
Symptoms of myositis are pain, muscle weakness, & muscles that are tender to touch.
Myositis is diagnosed by a blood test called CPK (creatine phosphokinase), & can also be diagnosed by EMG & muscle biopsy.
The muscles normally affected by myositis are the neck, thighs, shoulders & upper arms).
Myositis requires steroid therapy, as muscle inflammation may cause permanent muscle weakness & atrophy (wasting) if not treated.>>>>>>>
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