I was wondering if anyone had any similar issues. I have had a high positive ana -1:2560 nucleolar pattern) for the past year and a half but all other labs have come back normal. Lately I have been dealing with a horrible rash on my face that keeps getting worse. Hot, itchy, hard bumps, redness, on my neck and face. Dermatoligist is doing a biopsy if a few weeks (his nurse thinks it is lupus and the bloodwork is just not lining up). I fight against horrible fatigue, body aches, brain fog, and get so tired it feels like I can't breath or think straight. I have been on a list to see a rheumy for 2 yrs with no luck. I was sent to see an internest (older man) who told me he thought I was depressed because I was a stay at home mom.....can you imagine! I am just so tired of talking to drs. Just wondering what others have experienced while trying to find answers.
"The Lupus Book" by Dr. Wallace says the Nucleolar pattern are not often seen in SLE and suggest scleroderma. But I must say this is an extremely high ANA. Are you experiencing joint pain and swelling also?
Your internist is probably suggesting depression because your tired and your blood work isn't being specific enough to suggest Lupus. And it's an easy thing for him to blame it on so he doesn't have to go through the trouble of figuring it out. A good doctor will want to do what they can to figure it out. A good doctor will be open minded to the possibility of Lupus and not shrug it off due to certain things not showing up in your blood work, & they will try various things to see if it helps you feel better. If you say your not depressed, a good doctor, will believe you. Some doctor's rely on inflammatory markers, CBC's, to suggest Lupus or any other autoimmune disorder, and if it's not there, it's very easy for them to blow off your ANA and your symptoms.
I have the same issue & I've been dealing with it 14 yrs. My condition has been blamed on as fibromyalgia (I have no tender points of fibro), and the last rheumy I saw said that was mostly a disorder due to depression anyways. I did have a past diagnosis of lupus but it was taken away, not by the rheumy, but my internist didn't believe I had it. My ANA was always 1:320, last year it went up to 1:640. The antibody (RNP) did not show up until last year. And from the very beginning of this, I've had horrible fatigue. It just started happening out of the blue, off and on for weeks at a time, then became chronic. I was young enough to have no reason to feel that way.
It's no wonder your a stay at home mom and not working, with that type of fatigue. And not working is a choice, if your husband is taking care of you, and you don't want to work, well more power to you, doesn't mean your depressed, like duh. I get depressed from the fatigue from time to time, when I'm bedridden from it. It just gets really hard to deal with. Hopefully your biopsy will prove the issue, that way your doctors can't question what is wrong. My ANA pattern is homogeneous & nucleolar. I don't have any condition associated with a nucleolar pattern. I'm being evaluated for questionable MCTD.
Find a good primary doctor that will listen and help you. Ask if they will try you on plaquenil and/or amantadine. Both have been helpful with my fatigue. The plaquenil will help you if it is Lupus. My internist prescribes me plaquenil. My neuro started me on amantadine and I am quite happy with the results so far.
Thank you for your replies. To Karajo, yes i am having alot of joint pain, raynaulds in hands and now feet also and weakness as well as weird rashes. When I went for my appt the Dr. was busy and I wasn't able to get the biopsy done and am still waiting. It has been a very frustrating 2 yrs, waiting, waiting, waiting.....but I try to stay positive and keep active with the kids (though that means I usually crash about 9 pm right behind them for bed). Thankfully I have a supporative husband and family and they can telll that something is just not right, but we make the best of it.
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