Posted 7/28/2011 4:46 AM (GMT -7)
I'm a 25 year old male American living in Taiwan and I was hoping to get some advice here. Last December I started noticing muscle twitches especially in my legs, and I went to see a neuro at a local hospital, got a nerve conduction test and a round of blood tests. I turned out to have high Anti-nuclear Ab (160x speckled), so she suggested I had lupus and sent me to an immunologist. He gave me a new round of more detailed tests, and nothing came up (Anti-DNA, Sm, etc all negative) - my C3 complement was slightly low (86.50), at the very bottom of the normal range, but since I had no other symptoms he said we just had to wait and see. At this time I also saw two other neuros (one of whom suggested Benign Fasciculation Syndrome) and another immunologist, who had the same conclusion as the first.
As I didn't have insurance at this time, I waited perhaps a bit longer to follow up than I should have, but at any rate things stayed the same - I had, and still have, muscle fasciculations that occur pretty much all over my body, especially when I am tired. They have not gotten worse, and I have no pain, fatigue, or weakness. I took the same blood tests over again, and this time the immunologist also ordered a urinalysis. This time my Anti-nuclear Ab is down to 80x speckled, but my C3 complement is down to 67.30. C4 is also at the bottom of this hospitals range, 10.10, down from 18.90. Everything else remains negative, and my urine is fine.
So at this point I am not sure what to make of this. The doctor seems confident that this is lupus, and indeed, it seems that for the most part low C3 and C4 point to either lupus or active kidney disease. Since my urinalysis is clean, I would assume that the latter is unlikely. He says that my fasciculations have nothing to do with it, that that's just a coincidence, and told me for now just to avoid staying out in the sun, watch out for fever or any other signs of illness, and get checked again in three months. He said it seems "very, very light," in his words.
Some other relevant information in my background - my grandfather had rheumatoid arthritis and my mother had hyperthyroidism a few years ago (but they checked for thyroid problems and, again, I am negative). I've had acne rosacea mainly on my nose since roughly the age of 15, most recently manifesting in a couple incidents of localized cystic acne. I have been to several dermatologists, both in the US and here in Taiwan, and none have suggested that it could be a malar rash. Beyond this, the only other health incident I've had is mysterious joint pain that lasted for several months around the age of 20. I went to a rheumatologist at that time - he only found some mild inflammation on examination, and a blood test for rheumatoid factor was negative - I don't remember what else they looked for, if anything. Would a guy with joint pain necessarily have been tested for other autoimmune markers? He gave me naproxen, which I took for a few months before the problem went away just like that. I did get a throat infection last September, but this was after I took a trip to Japan and upon returning moved into a new environment with poor air quality, so I chalked it up to the travel, and I haven't gotten sick at all this year, when this supposed autoimmune problem has apparently been getting worse.
Anyway, I was hoping to get some opinions here. Has anyone had a situation like this? Is there a point in seeing another doctor right now when I have no symptoms (besides the fasciculations) and nothing to go by but a blood test? Is it possible that I've just had very mild lupus for a long time and never noticed it - and, indeed, wouldn't have noticed it now if not for the fasciculations? Do C3 and C4 continue to decline in those with lupus or will they recover after this apparent 'flareup' goes away? I can speak Chinese, so communication with doctors is not difficult. It's just hard to figure out what I should be asking and what I should be looking for. I am especially concerned about possible liver/kidney problems, since I understand that those can occur with no symptoms whatsoever - and even in this regard it seems that there is nothing I can do but get tested every once in a while. Surely a biopsy would be excessive in a person with clean urine and no symptoms, no?