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Very high ANA, all specific tests negative..."mild" sy

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I have a pretty high ana (1:2560 homogenous and speckled), saw a rheumatologist and all my specific tests came back negative and my doctor told me he couldn't make a diagnosis because I have no obvious symptoms of a particular autoimmune disease. The symptoms I do have are extreme fatigue, tingling in hands, feet, back and head, weakness in my legs. So far no hair loss and no major skin problems. I do have Raynaunds Phenomenon. I did see a neuro for the tingling and they tested for MS...that came back negative. I am supposed to get an EMG in a couple months if the tingling persists. Anyone have any other thoughts. Its frustrating to just wait and see. The rheumatologist basically told me to be aware that I could get very sick very suddenly and said that it will be something in the lupus "family"

I'm on adderall for the fatigue...its helped but its not something I want ot live on as its addictive and has unpleasant side effects itself and my neuro just upped my dosage...
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replied August 30th, 2011
The doctor can't diagnose you on the ANA alone. You need 4 out of the 11 symptoms to secure a diagnosis of Lupus.

It can take years for an autoimmune disease to rear its ugly head. So your doctor may just keep watching your symptoms and blood work before he can reach a definitive diagnosis.

The other symptoms you are having could point to LUPUS but they can also point to other autoimmune diseases as well. Lupus can mimick many diseases.
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replied September 5th, 2011
What you're describing is exactly what I have been experiencing for about a year and a half. That includes the lack of conclusive diagnosis despite extremely high ANA levels. The fatigue has been horribly debillitating. I also developed horizontal ridging on some of my toe nails in recent months. I am now also experiencing leg and foot swelling but I am exploring the possibility it is edema linked to venous insufficiency before anything else (hopefully not deep vein thrombosis). Yes, I too have Renaud's although the rheumatologist said it is not an indicator of Lupus. My doctor told me that for the most part treatment of Lupus is usually - get more sleep and anti inflammatories for any joint pain. She has indicated that the stronger lupus drugs are not prescribed for those kinds of symptoms. Basically, what I've got isn't enough to consider, say, prednisone so a positive diagnosis is irrelevant. Oh, I have had the tingling as well. Actually a bunch of stuff all strung together like being very muddle headed. And it's in a way that is both significant and notable. At first I chalked it up to being so tired, now, I'm not so sure. I've had weight gain but I do not believe it is associated other than I'm so tired I eat to feel better. So that boils down to choice really, not a disease.
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replied September 5th, 2011
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So you are having pain? Have you had an allergy test? Have you had any Hives or bad headaches. The reason I'm asking is because I had an issue with my arms, wrists and hands for like 6 months. I could barely hold a piece of paper. Had severe Muscle spasams. Turns out, it was from eating foods that Im allegic to even though I didnt break out in a rash from the foods that registered a 2 or 3. I stopped eating them and I got better. I had seen every doctor out there and never got a diagnosis but I'm better now. Soon as I eat those allergy foods, the pain comes back. I researched "Leaky gut Syndrome" which is called Intestinal Permability. Look it up and read several sites on it...I can only get a diagnosis from ordering the test from a doctor who has an account with Genova Diagnostis. Only one test out there for that. Leaky Gut Syndrome can cause or Mimic Lupus, Ra, Chronic Fatigue, Skin disorders, parasites, Candida, MS and alot of others...Its worth looking into it.
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