Advice or opinion . . . please!

[Roberta12]

Hi all,
Just a quick (or long:) ) question, opinion, or advice? The situation is: I was diagnosed with UCTD a year ago although many of my symptoms started in my late twenties (now late 40's). I haven't been to a ton of doctors - only a rheumy twice, two neuro's - once each (the first one suggested it might be lupus because of symptoms then (after test results) said even he could probably diagnose me with lupus if my ANA had been higher (it was 1:160 speckled - he thought it needed to be at least 1:640) and a couple of GP's - the first one not believing anything was wrong). Now, I've recently moved and am actually working on a fill-in basis for a doctor I used to work for.
Because I was feeling pretty lousy lately - I had some blood work taken (last week) and for the first time in the last four blood tests my ANA was negative (last one 1:320 speckled). I've been on Plaquenil for just about a year and feel it has made a huge difference! But here's the thing: I still have FATIGUE, fevers, headaches, myalgias, facial blotchiness/rash on occas, photosensitivity (although this has improved greatly too) etc, etc, etc.
The second time I saw the rheumy he said if my spinal tap was okay then it would be another strike against against a CTD. I've been told on the phone by an M.D. if I came to her office with the blood work and symptoms I've had - she'd diagnose me with lupus??!!
I've had an MRI and EEG with so called "normal abnormalities" and my tap had a couple of things that were "off" but "okay". So, since the neurological symptoms have improved . . . and my metabolic tests (kidney, etc) were okay . . . do I let it go???? What I was told by the rheumy was that I needed a good neurologist (the one I saw at a teaching hospital didn't know "squat"8) she just said she got the opinion the rheumy was looking for a confirmation on a diagnosis of lupus. Wow, brilliant! Long story, but still . . . help, please, . . . do I let sleeping dogs lie (which I'd like to do) and just let it go??? . . . Sometimes I feel like I'm doing okay and should just move on and sometimes I feel so downright lousy (that something is so VERY wrong) that if I don't get some answers . . . :eek:
Well, I'm rambling . . . sorry, this is just one of the times I'm not feeling too swell. Thanks all . . . and again, would appreciate any input.
Roberta

[helloos]

Hi Roberta.

I don't know if I understood your post correctly and if I didn't oops sorry

You are looking for a diagnosis but are starting to feel better?

You are under a rhemo care who put you on Plaquenil and it has worked somewhat for you.

Why are you not just staying with that doctor that treats you?

If this is new blood work that you have just taken that is showing things then can't you go to the rhemo who put you on Plaquenil? And bring the results?

I would keep investigating and not forget about it because it is important to continue following under the doctor and with your symptoms that have not seemed to disappear.

[Maia]

I think I understand exactly where you're coming from! Like you, I have some very disturbing symptoms which my doctors are not taking seriously. Slight abnormalities on MRI, but "not too bad". Just supposed to return and repeat exam every 1-3 years. etc. etc. etc. You have made an improvement with the Plaquenil but are still suffering and want to know if there can be more improvement right?

The good news is that you are on Plaquenil. You may want to go back to rheumy, and ask if there is anything else you should do/add to gain more improvment in your symptoms because you still feel pretty crappy much of the time. As for getting a dx of lupus versus UCTD, that probably wouldn't gain you a lot in terms of treatment because they are both treated quite similarly. It is definitely important to see a rheumy or GP who knows about lupus at least once a year to run blood/urine tests to check for kidney problems in particular. So don't let sleeping dogs lie too long no matter if you're feeling fine or not! :P

[Roberta12]

Paula and Maia,
Just wanted to say thanks for replying. As far as staying under the same care (rheumy) originally he was 267 miles away now he's well over 400 miles away and when I tried to contact the first neurologist (with continuing symptoms and a higher ANA and CRP) he never returned my phone call(s) (called twice).
I'm happy with the GP I'm with now (since the recent move) but was honestly a little surprised with the negative ANA? Perhaps, that should be my main question - does this seem unusual to have three positives and then the negative (my sed rate was down and so was my C-reactive protein - normal) all of this I'm attributing to the Plaquenil . . . hence, definitely plan on staying on it . . . This GP said, if necessary, he would recommend me to a very good rheumatologist that is within 100 miles.
In all honesty, I quess I really can't complain about my situation except that some of the symptoms I still experience can be a little "disconcerting" to say the least.
I think what happens is when things says "normal" when it hasn't been for sometime and you don't feel "normal" you're looking for some answers somewhere. The neurological problems I've had in the past (and still do) have been very frightening and I think a part of me at times feels it could worsen significantly again. But this is the same that so many here face . . . so, I've probably answered my own questions:rolleyes: I'll do the best I can and be happy that things for the present are okay and cross that bridge (or fall on it :lol: ) of possible future problems when I get to it.
Again, I appreciate your help and support.
Roberta

[Clare.T]

Hello Roberta

I agree with Maia about the UCTD v SLE diagnosis not making much difference in practical terms. As far as I can gather, UCTD means simply there is no specific evidence of a distinct CTD. It is perfectly possible to have SLE without any specific disease markers.

I think it's about 20% of those diagnosed with UCTD who go on to have very clear SLE at some point. I suppose this means that something specific truns up - antibodies like ds DNA or lupus related skin problems for example.

I can't know if I am right, but I suspect many people with an SLE diagnosis would be described as having UCTD by another doctor who is a stickler for the formal and academic distinctions between the diseases.

The ANA can vary and while it isn't regarded as an indication of disease activity it certainly can go negative or decrease in response to treatment.
Nor does it have to be particularly high for an SLE diagnosis, so I don't know what the 1:640 remark means except that the higher the titre the more the likelihood it's due to a CTD, lupus in particular. Very few healthy people have an ANA of 1:320 and there aren't that many diseases for which it's of diagnostic value.
The question seems to be about the reasons for your continuing poor health, is there need for additional general treatment for lupus and further investigation of possible other causes that might need special or quite different treatment

Good doctors will go by what the patient is feeling not by lab tests alone whch may not correspond with the symptoms
In your situation I would do everything within my means to get to see a lupus expert. If that's not feasible, then I'd discuss additional treatment in the hope of getting my quality of life and ability to function improved.
She might not feel able to prescribe or supervise other possible drugs such as Imuran or willing to risk giving a potent medicine when she's not sure why.

The success of the Plaquenil would seem to confirm a CTD.

Definitely continue to get regular checks - I'd want them every 6 months or any sign of worsening of symptoms or new ones.

Best of Luck
Clare