Hi folks,

I am new to this group (never used googe groups before actually) but
am looking for information. From my experience some people in support
groups have more knowledge about their own condition then you can ever
learn from general information on the internet, so I thought I'd ask
your help.

Ok, here's my question. I wonder whether I really should be worried
about the question whether I could have lupus or not. Actually I am
not worried at all, but of course something in my mind is, or I
wouldn't post here at all. Why do I ask this question? My story in
short: (or at least I'll try to be short, I am well known for rambling
in my posts.. and in real life ;))

When I first saw a rheumatologist about a year and a half ago, my
story was that I had had general joint pains for years. The problem
with my knees had been put down to patellar chondropathy, and I always
thought that the other pains would come from the same thing. Wrong
thought, for this is not possible ;) but how should a teenager know
this? Well the rheumy did some tests of course and a physical exam,
then a few weeks later called me for the verdict. He told me my ANA
was tested as positive, and that this could point to SLE, even more so
because I had answered positive to his question if I were
photosensitive. But because another test had been negative, he said he
didn't think much of it and diagnosed me as having fibromyalgia. The
fact that I did not even fulfill the criteria for this condition (I
did not have the so called tender points) and that I had many problems
with my joints (namely subluxations) that could not be explained from
this diagnosis, did not seem important to him. Other doctors have said
since then that I did not have fibromyalgia, and since I already
doubted this diagnosis very much I do not think of myself as having
it, though oficially it is still in my files. I did not think much of
the positive ANA either, as I thought the rheumy would have taken
action if it were a strong clue. He just said that if I wanted to have
it ruled out, I should discuss it with my GP. I never did this, as my
GP was not the one who refered my to the rheumy. Case closed, I
thought.

Some time later, I discovered I had hypermobility syndrome, (HMS) a
heritairy disorder of connective tissue in which the ligaments are too
lax and thus can cause the joints to be painful and instable. This
explained my symptoms of pains, fatigue and joint subluxations. I had
been told I was hypermobile ("double jointed") before, but never knew
about HMS. I wondered about the blood test again when I found out that
SLE can also cause joint laxity, but thought that I would be very sick
indeed if that was the case for me. So my diagnosis was HMS, and I
think (still do) that that is correct.

Now I have had a recurring rash for many years. It always appears on
my hands and elbows, and because it never bothered me and always went
away by itself I have never seen a doctor for that. Some weeks ago I
was at the docs with another question (HMS related) and because I was
having this rash again, I asked him if he knew what it was. First he
said it was some kind of eczema, but he thought it strange that my
skin was not dry, as is usually the case in eczema. I then told him I
had had short episodes of this rash for many years, that it always was
on my hands and elbows, and that the sun made it worse. He then said
he had no explanation for that, and off I wobbled. I thought my rash
had such specific features that I had thought he would maybe know what
it was, so I started to look on the internet myself. Maybe I am making
too much of this all (which is, in my eyes anyway, just a simple rash)
but the thing it is most similar to, is the discoid patches seen in
lupus. My patches are red, raised, and usually become light in the
middle, leaving a red border around a yellow-ish thingy. The fact that
they react to sunlight is also a big ponder.. when I look at the ACR
criteria for SLE, I see that together with my previous sun allergy,
(which still occasionally flares up slightly) I display three of them,
whilst many of the other things I have never been tested for. Now what
do you think of this? Am I over- worried? Taking little symptoms which
seperately would mean nothing and making things bigger then they
actually are? I do not think I have SLE. I have some symptoms
(arthralgia and fatigue) that are seen in SLE but which can also be
explained from the HMS. I am not often sick, never had any major
health problems other then the HMS which is quite disabling for me,
and though almost all of my joints are sore, they have never been
arthritic. But my ratio is trying to tell me to be sensible and at
least dicuss it with my doc. I hate however knowing more then he does
(as is already the case when it comes to HMS) and am terrified of
bringing things up, especially now as SLE can be a dangerous condition
and I don't want him to think I am worried about my health. (As some
of you may know, when you have searched for years for the correct
diagnosis you are told too often it is all in your head or that you
are a hypochondriac- so if I tell him I searched on the internet and
want to have checked some things out.. *sigh* well you probably know
what I mean.)

People here will probably tell me to go see my doc, and they will be
right. But I am hoping some will also be able to give me some
information and maybe even answer some of my questions. Well so much
for trying to be short! :P

Sen