Another High Ana - But No Diagnosis. So Frustrated And Concerned!

[iheartcats]

My ANA was 1:320, Homogeneous. Apparently this is most commonly associated with Lupus. I'm only having my usual POTS symptoms lately with worse than usual allergies. I think it's the weather/time of year making those worse.

But I'm supposed to watch for changes, but as you all know it's hard to differentiate POTS and other things. I don't seem to be losing hair or having odd rashes, at least. But I'm so afraid I'm going to develop Lupus! What will be my chance of getting my life back on track then? Do people lead somewhat productive lives with Lupus?

I'm trying to take a deep breath and tell myself I'll do what I can, while I can and go from there. But it's so stressful with the chance of Lupus hanging in the background. I was told that high ANAs can show for years and years with nothing else so I hope that's accurate.

I just seem to be getting nowhere on the Autoimmune issue I may have and how POTS ties in.

[Noreen]

hey there-

I can so relate. You can hang out in lupus limbo for decades. It is beyond frustrating.

All you can do is keep checking in with your rheumy. My meds treat for lupus and APS but the definitive dx the doc uses is RA.

So sorry,

noreen

[Godsgal]

I had a high ANA when I was 18 and no one could figure out the meaning about it. It ended up going away and it has tested normally for years. Now 11 years later, I have POTS and dysautonomia and I too have some lingering autoimmune disease but no one knows the dx. My ANA is normal but I have other things in my blood work suggesting the disease. Hang in there and try to find the best rheumatologist you can find. If the one you have doesn't know, find another. Don't give up hope. Take care

[DIXZELAND]

I too have abn ANA for years. I don't have odd rashes, but do have mouth sores, sensitivity to lights, fatigue and some joint pain. However, no actual dx of LUPUS. Hang in there I know its frustrating.

Dixie

[iheartcats]

So you can hang in the balance for decades? Wow. That's upsetting!

I have joint pain sometimes, and random hives. But those could be POTS and allergies so no definitive diagnosis.

I have to get tested again in six months so we'll see. It's such an $$$ test, too (the ANA).

[juliegee]

Hi Cat Lady-

I have a few thoughts. There are many other tests besides the ANA that can confirm or rule out autoimmune diseases. You really ought to have them done. There is also an autoimmune autonomic dysfunction. At the very least, you should consider being tested for that. It's a blood test where they check the level of your ganglionic-receptor–binding antibodies. If your levels are high- that might have treatment implications for HOW you treat your symptoms. That could be big.

I might recommend finding a really great rheumatologist who will help you sort this out. Be SURE to list all of your symptoms for him/her. I am often tempted not to mention symptoms that have already been DXed. Share EVERY symptom. I often fall into the trap of not mentioning symptoms that have already been accounted for by other Dxes. The doctor needs to have your entire clinical picture.

If it makes you feel better, I have the exact opposite problem. I've never had a high ANA, but my rheumy is convinced ALL of my symptoms are attributable to autoimmune illnesses & she wants to begin aggressively treating them

Let us know what you find out.

Hugs-

Julie