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Hi everyone.

Over a year ago, I was diagnosed with an autoimmune-related skin condition. After finding out that people with this skin disorder are likely to have a systemic autoimmune disease, I began doing research on autoimmune disorders. I was disconcerted when I found that I actually had MANY of the ACR criteria for lupus (malar rash, photosensitivity, joint pain) as well as many other common symptoms (extreme fatigue, "mind fog", headaches, swollen lymph nodes, low fever, and hair loss). Hence, I asked my doctor to do the proper blood work. Though she told me I didn't need it, she did it anyway. My ANA came back as 1:320 in the speckled pattern, as well as a low hematocrit.

A few weeks later, I went to a teaching hospital in Boston, whose lupus clinic was recommended to me. There, I saw a medical fellow who examined me and was under the supervision of one of the hospital's top lupus doctors.

I made a list of all of my symptoms, as well as my previous lab work. Oddly enough, I thought that the blood work in combination with all my symptoms would leave no doubt that I had lupus or another autoimmune disorder. Though I filled out a questionnaire about my symptoms in the waiting room, my doctor never once opened it. Instead, he asked me general questions. They didn't fully cover my symptoms. So, I had to keep interrupting him and letting him know about things he was missing. Even then, he only heard about the symptoms that were the worst and not the complete list.

He did an examination that consisted of checking my joints and lymphnodes for swelling. [Of course, there were none, but I know that when I have these "waves" of feeling very poorly, both mentally and physically, that my joints get much more painful and my lymphnodes do swell up.]

Afterwards, he went out and talked to the doctor supervising him. They both came in and she said, "Well there's nothing from your examination that would indicate that you have lupus. It sounds to me like you're one of the 5% of the population who is healthy who just has a positive ANA."

So, I asked this supervising doctor about possible explanations for my symptoms if I don't have lupus. She said that all of my primary symptoms can be explained away, for instance, the malar rash can maybe be explained by rosacea and the fatigue a result of poor sleep quality. They then said they would redo my ANA, but that it wasn't likely that there was anything wrong with me.

A few days ago, I got a phone call from the medical fellow saying my ANA came back as 1:40 speckled pattern. He said that since this is only weakly positive, it confirms their suspicions that there is nothing wrong with me, but that if I'm still concerned about this in a year then I should come back.

I had done quite a bit of research before this appointment and was pretty sure I knew what to expect. However, so many aspects of it blew my mind. Should I take this doctor's word for it that there is nothing wrong with me? I am still tremendously confused as to why the supervising would say that it appears as though I'm just part of the 5% of the population who has a positive ANA when there is no problem, when the entire reason I had the blood work done was because I had so many symptoms. I was actually quite happy to find a disorder that described so much of what I was feeling, because it meant that there were treatment options I could try.

Where do I go from here? Should I try to find another rheumatologist? Did I do something wrong at my first rheumatology appointment? Why was this doctor who is supposedly very good so dismissive about my symptoms? Should I really wait a year to have these symptoms considered again??
Hi. In your shoes, I'd track symptoms (duration, etc.); and if your symptoms warrant, I'd definitely revisit the rheumie group, or try another rheumie, one who specializes in lupus & its close cousins. Of course I'm only a patient, but I'm wondering---

1. What was the autoimmune skin condition you were Dx'ed with? How was it Dx'ed, meaning, was a skin biopsy with immunofluorescent testing done? Or based just on appearance? FYI, skin problems are probably IMPOSSIBLE to Dx correctly based on appearance only. Ask for copies of your old dermie labwork (if any), to present to future drs.
2. Did anyone run bloodwork BEYOND the ANA, meaning for specific autoantibodies? ANA results in & of themselves don't Dx anything, since ANA can be positive in a number of conditions; and it can also be positive due to a passing virus or to a family tendency. In short, ANA alone carries little weight. (Keep copies of all bloodwork in your own files.)
3. Did your drs. do urinalysis? (Should have!)
4. Re: lack of interest in your lifetime medical history... well, I agree. A rheumie SHOULD demand a full account & should take it seriously. After all, the lupus criteria are properly applied to a person's LIFETIME.

That said, careful & caring drs. want to SEE your problems firsthand, so your past probably is given less credence. In my own odyssey, ONE rheumie asked for & carefully studied my lifetime medical history; unsurprisingly, he was the one who Dx'ed me. BUT he RE-DID all my bloodwork & urinalysis; AND he sent me to a dermatopathologist for a final skin biopsy. AND the d/p had me track down leftover skin samples from earlier biopsies, which he then RE-TESTED, in addition to performing a NEW skin punch. Conclusion? They demanded *scientific evidence* before making the Dx.

For almost all of us, the diagnosis is a PROCESS, not one APPOINTMENT. And that drs. want hard facts (test results) in addition to soft facts (your oral history).

I hope you post more when you can & that you don't stop trying to get a handle on your medical issues. Hang in there! Meanwhile, bye for now, with best wishes. Vee
When I was Dxd with sle I too only had a 1:40 speckled pattern ana...... at the time I also had liver, kidney, lung, heart and skin involvement.....my dsdna which was tested at the same time the ana was, was extremely high, as was my igg. c3 and c4 were terrible, urinalysis was way off too. I also had horrendous results regaurding organ function etc..... If my Dr. would have stopped at just the ana.....I would be dead now. Follow up on this like Veej suggested. Next time, try to get the Dr. to test for more specific antibodies, and save any unusual test results like urinalysis or cbc's etc. As for seeing another rhuemie, I think it is a good idea for you to get another opinion. Also, the next time your lymphnodes get swollen and you are feeling crappy, head to the Dr..see if you can get them to do some bloodwork then and at least document that yes, they are swollen and yes you are suffering from fatigue/malaise etc.., another Dr. may be more likely to take these symptoms seriously if they have been documented by another physician. No, I don't think you should just deal with the symptoms on your own for another year with no treatment, keep at it, even though it is difficult and at times discouraging.
Thanks for your response VeeJ.

In response to your questions:
1. My skin condition is an overlap of lichen planus and lichen sclerosus. It was diagnosed with a biopsy, which was taken from my vulva. So, I'm not sure how relevant that would be.
2. No, no one did any bloodwork beyond the ANA. It was done initially as kind of a "screening" by a doctor with no real familiarity with lupus. The rheumatologist didn't do any further testing on my blood sample because the ANA came back only weakly positive and he didn't suspect there was a problem anyway.
3. Both doctors did do a urinanalysis, which both came back completely normal.

For both VeeJ and realisticchic, thank you very much for your support.

If I do go see another doctor, do either of you have any advice on how to handle this better? Should I go in and say honestly that I've been concerned about lupus, have been tracking my symptoms, and have compared them with the ACR criteria?

Ultimately, the ANA test was done because, as I was filling out a take-home questionnaire for a doctor, I became concerned at the boxes I was checking off. After researching some of them, I realized they were consistent with lupus AND that I had many other symptoms consistent with lupus. Do I tell them this?

Also, should I even bother going to the new rheumatologist if, when my appointment comes around, I have no physical symptoms to show?
Hi,

I also went to a well known Lupus center in Boston and met a Rheumatologist that was so set that I had Sjorgrens instead of Lupus that she shrugged off everything. I decided to find another, recommened, Rheumatologist in the Lupus Center and had a great visit.

She was honest and listened to all my concerns and answered all my questions. She felt that something Rheumatic was going on, judging from the tests taking and my joint pain that was almost absent after being on Plaquenil for four months. She decided not to give me a diagnostic "label". She wants to wait and see and hopes that the Plaquenil will head off any future problems.

You may want to consider finding another Rheumatologist that is recommended and be willing to wait for an appointment. Keep us posted and best wishes to you!
Hi Angie.

Thank you so much for responding. I have no idea if this is allowed on these boards, but is there any way I could get the names of the doctors you saw? I'd love to know even the name of the unhelpful one, so I know to avoid them.

I really don't care about getting a diagnosis. I'd just really love to be listened to and to be able to try some sort of treatment.
Hi Lindsey,

I would recommend Dr. Kane-Wanger at Beth Israel Deaconness. It may take a few months to see her but she was very kind, listened, and answered all my questions. I agree that the most important aspect of the visit is not necessarily the results but the experience. I have no firm diagnosis but at least have the acknowledgement that something is going on and that I am under someone's care that shows concern about my well-being. Good luck to you and keep us posted!

A.
Thank you SO much.
I def think you have SLE or another autoimmune disease....Learned on my own that you need to be your own doctor sometimes and go with your gut feeling..sometimes the
"TOP" doctors are not the "RIGHT" doctors for us...I went to a TOP doc at a major hospital who told me to get more sleep? I was sleeping 16 hours a day? nuts...finally found one who diagnosed me..Your doing great..just need to find the right doc that can help you..dont give up!
Thank you so much for your encouragement. It's really, really appreciated.
Hi all. I just received a copy of the blood work results taken by the rheumatologist.

It appears that all that was done was a CBC, urinalysis, and an ANA screen. It does appear as though since my ANA was only 1:40, speckled pattern, that the rheumatologist did not do any further antibody screening.

Everything else appears normal, although my hemoglobin and my MCHC (?) both came back borderline low. Does this give me any more information?

Also, lately I've been sleeping much, much more than usual -- about 13-15 hours at a time. Is there anything I can do about this but wait until my next appointment?





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