Scleroderma or Lupus or neither?

[JenB12]

I posted here a year ago or longer regarding my strange symptoms and test results. A short synopsis was: I had severe fatigue off and on and felt crummy as though I was hungover every single day. And also I had a dx of hashimoto's. My lupus panel showed only an ANA of 1:320 Speckled and little else except for decreased white blood count as well as trace levels of blood in the urine.

My Dr. concluded that it might be an autoimmune disease that just had not fully developed yet and she said we would re-test everything in a year. Well it's been a year and now things that were not positive before are now positive.

my ANA is now at 1:640 (still speckled).... but now I have a positive SCL-70 (scleroderma). 12.76 (range is anything >10 = positive). Also I had low c3, low c4, elevated CRP.

SED rate, ASMA,  anti SSA and SSB were neg and Anti-double stranded DNA was also Neg.

So my list of positive antibodies are:

ANA 1:640 speckled, positive anti phospholipid antibodies, and positive Scleroderma antibodies. low c3, with Hashimoto's... Also dx gluten intolerant 6 months ago.

I have NO joint pain, except some that comes and goes in my wrists but very infrequently.... and a choking sensation when I lay down at night (like my throat is closing in on itself). I still have severe fatigue off and on and, abdominal pain and cramps on occasion... sometimes some nausea.  This doesn't really sound like Lupus but also defn does not sound like scleroderma since i have virtually NO skin symptoms.

I'm going back in to see my Dr. next week and see what she makes of these new test results but i really wanted to know if it is possible to have a positive scleroderma test with out having the disease. Right now, whatever i have I know i am in the early stages and that I have caught this early on.... i've been watching my antibodies like a hawk ever since the positive ANA 2  years ago.....

[JenB12]

opps that posted before i was done!!!!

My appointment with my internist is tomorrow afternoon. I had the appointment set before i even got my results back with the new positives. I've been waiting a long time for something new to come positive in my blood work. I've known for a few years that something was wrong just based on how i felt. Only thing is that my symptoms dont match any disease exactly quite yet.... but then again things have been changing a lot for me over the last year.

When i say i dont have skin involvement i mean it's not like that of any description i've seen for lupus or scleroderma, and i've only have a few instances of strange skin reactions that i can't seem to figure out what they are.... I only have a few small brown patches on my arm that have cropped up with in the last few months.... one of them has completely lost pigment and gone from brown to white though it's only a small irregular patch about a cm large. The other skin reaction i have in the sun.. but not like the normal lupus reaction: I get really red and my skin becomes painful to the touch as though i am severely sunburned.... but then a couple of hours later it will be fine. Along the same lines I will get a random red patch that looks like a sun burn, and then much like a terrible severe burn, the skin will sluff off and leave an open wound which will heal over the course of a week. This has only happened one time on my face in a long patch next to my nose and upper lip in a size of about 1 inch by 1/2 inch.

I do not seem to have any skin hardening like that of scleroderma... if anything my skin seems thinner as i age...

I know antoimmune diseases are peculiar, and personal... and effect each person differently. I'm just so worried because i was NOT expecting to have positive SCL-70 and it scares the crud out of me given it seems to be pretty specific to diffuse scleroderma.

I will let you know what my internist says tomorrow but i cannot help but be a little nervous about this..

[JenB12]

hi Karajo,

thanks for your reply... they are always helpful and informative. I didn't realize low c3 could be indicative of kidney involvement! Interesting.

[karajo]

Hi Jen, I remember you.  

I have a few things I would like to point out.  Speckled pattern is seen in SLE, numerous other autoimmune diseases and in some healthy individuals w/ low amounts of antibody.  With that said.  You also had possitive SCL 70.  This could indicate scleroderma or SLE.  Low c3 and c4 means the  body is undergoing a severe immune reaction, primarily in the kidneys.  Lupus and other things can cause this.  A repeatedly positive aPL test means a higher likelihood of developing internal blood clots or problems w/ pregnancies.  Weakly positive test that come and go are common and generally not important.  

I would think the swallowing issue "could be" scleroderma.  I do know that autoimmune diseases can show up in labs years before symptoms become an issue.  

[HoneyBear19165]

This sound very familiar to me.  I got sick on 5/3/2010, mine started with a rash or out break of spotts all over my body.  Did you have this incident too?  Today I felt totally drained and unfocused, kind of like I was drunk.  I too have had lab work that the doctors seem to be guessing at to make a diagnosis.  It's been complicated and frustrating!  I go see the doctors for direction, but seem to get more information off the internet than from the doctors.  One thing that is remarkable is that I now stutter, sometimes to the point of not understandable.  If you get any good information could you please share with me?  My husband and I are wondering what we are paying for with doctors that can't come to a diagnosis then pass me to another doctor.  The new doctor does the same tests that were just done and come to the same conclusions.  Then I am referred to another doctor.