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flint01
Regular Member


Date Joined Aug 2014
Total Posts : 25
   Posted 11/4/2014 10:48 PM (GMT -6)   
Hello Everyone. I have recently had an ANA 1:160. I am in a lot of pain (since June). I have veins "popping out" sort of. And a lot of pain associated with that. It seems to be a vascular type thing., and pain. Also in my muscles. I've had shortness of breath. This all started after my foot swelled up in June (it's Nov now).. For a whole month. I was told I must have twisted my ankle. They did not say I have Lupus (I went to a rheumatologist)- I have been to a ton of doctors. I went to a party Saturday., and danced for an hour (I used to be able to dance for hours).. I have been "knocked out" for days. I couldn't walk for 2 days., because my back went out. But I know it's because of this circulation thing.. because it feels the same way.. - Like a "charlie horse" - I feel it right now. I have intermittent headaches.

I'm upset.. because I'm pretty sure it's Lupus., and I am getting blown off by doctors. In 2011 I collapsed & was in the hospital for a week (intestines stopped working, amalyse was high). A year later I was in the hospital for a week again (high liver enzymes). At those times I had an ANA of 1-80.

Anyway., I'm not working currently., and I don't even think I could if I was. I'm afraid for my future. I'm not really getting help with what's going on.. even though I am going to a lot of Doctors. I don't like the rheumatologist., but my second opinion isn't for a month & 1/2 (because I'm a new patient).

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/5/2014 1:03 AM (GMT -6)   
I'm sorry to hear that you're having so many issues with pain and swelling in your feet. Yes, your ANA is positive but it's on the low side and that may be why the Dr hasn't said yes to lupus. 1:80 is just barely considered positive. Then ANA's double from there, the higher the number the more they pay attention.

Have you reviewed the 11 symptoms of lupus? If you haven't you should go to the lupus foundation and see the criteria for a DX of lupus. Lupus is a very difficult disease to DX. It took my Dr's 13 years before they agreeed I had and started to treat my symptoms.

I know it's really frustrating and upsseting, plus living in chronic pain is no way to live, trust me I know I'm in it all over 24/7. You can have a postive ANA w/o having lupus. People can have a positive ANA for many reasons, as simple as being sick with the flu.

If you feel you're not getting thru to your Rheumy, I'd get another one and see what they have to say. Take photos of any rashes and swelling, keep a journal of symptoms and your pain levels. Do you're stretches and make sure you eat healthy and get plenty of rest. Also, stress is a huge flare up of lupus so be careful with your stress levels.

If you have any questions, please ask away and know that we're here to help listen and offer up our experience with things. We aren't doctors so we can not DX you but we certainly can tell you if any of us have every had those types of Symptoms

Take care and good luck, I hope you start feeling better really soon.

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.

flint01
Regular Member


Date Joined Aug 2014
Total Posts : 25
   Posted 11/5/2014 7:53 AM (GMT -6)   
Hello., Thank you. Do you know what 1:160 means? That was my last result. Is that a low positive? No one told me. A primary was concerned., but the rheumatologist didn't seem to be concerned. She did say I have rosacea. I have red on my face neck & arms., I also get little round bruises. I don't like the sun. I used to. I was not breathing well., my chest hurts at times. A pulmonologist (he said it was asthma., and later seemed to be "something else"). He sent me to a cardiologist. He gave me an in office EKG & said it was fine. I was suddenly anemic & they gave me intravenous iron 2 times., and said I'm fine afterward. I've had pain, everyday., and varieties of inflammation. Headaches. The rhuematologist said maybe it's fibromyalgia. I've had high anticardiolipin (Im not sure what that is).. positive cryofibrinogen? High EOS? And other high numbers.. but they are not concerned. None of these numbers bother me.. except that.. I am in a lot of pain., and weak. I feel like I am being "attacked"- I literally feel like something is eating at me. Anyway. My main question is.. Is 1:160 high? Or is that low? That was my last test.. Thank you for responding.. =) -Nancy

flint01
Regular Member


Date Joined Aug 2014
Total Posts : 25
   Posted 11/5/2014 7:54 AM (GMT -6)   
Oh.. I would like to add.. it does seem to get triggered by stress. Whether it's something emotional.. mental (like trying to work on several things at the same time).. Or if I'm doing something physical (I pulled up a carpet & floor earlier in the summer.. and I was whipped out for several days).. Thank you =)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/5/2014 12:30 PM (GMT -6)   
You mentioned you have inflammation a lot. Fibromyalgia does not cause inflammation it's just constant pain that waxes and wanes but never goes entirely away.
There is a list that rheumys go by to diagnose lupus. You need to meet 4 of the 11 indicators. It sounds like you have at least four of them.
If he keeps saying fibro only then you need to change doctors.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

flint01
Regular Member


Date Joined Aug 2014
Total Posts : 25
   Posted 11/5/2014 4:35 PM (GMT -6)   
Thank you, Joy. I met someone by chance who knew this Rheumy., and did not "like" her. I did find someone else., but since I'm a new patient., I have to wait till mid December. Thank you for your input =)
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