Immune Mystery

[ImmuneMystery]

I need help finding out what is wrong with me. I have been to several doctors over the past 9 months and nobody has been able to figure out what is wrong. All the doctors agree there is something definately wrong, but have not figured it out. I have literally had dozens of tests. Two main symptoms are painfull exessive swelling of multiple joints to the point of immobility, knee, big toes, ankles. Intestinal issues are loose stools, diarrhea, anal fissures(past), abdominal pain, gerd, mouth ulcers. As well i have fatigue, and experience very bad unexplained muscle pain in the arm, legs, and back. calf muscles extending to achiles tendon being the worst. I have been told that i DO NOT HAVE: crohns, lyme, lupus, celiac, behcets. I am really scared of this condition, not knowing what it is is making things worse. Most recent doctor treating me believes i may have lyme and has sent a western blot off, with no posetive elisia. She also believes that my immune system may be reacting to some sort of insult in my body, and that i may have some form of IBD. Any ideas, suggestions, advice would be greatly appreciated. I can provide a list of all diagnostic tests and procedures if necessary

[ImmuneMystery]

It's been a really confusing ride for me. I have had doctors literally tell me that they have given up on trying to find out what is wrong. The problem that i have with this sickness is that all of my symptoms seems to fit a huge variety of conditions and diseases. I almost wish that I did have that typical Lupus face rash. Some of the things other people say in these forums really stand out to me. Like when they are in remission some people describe that when they sleep they wake up stiff all over like they slept in wet cement. I feel like that everymorning. These disease symptoms seem to fit me so well (like so many others) but I am afraid to push my doctor test me more for it. I have lost SO much mnoney trying to find out what is wrong.

[karajo]

Yes, lupus and any autoimmune can go into remission.  I know right before the really high ANA I had, I went awhole month w/o any symptoms.  I was jumping around so happy.  (when you've been as sick as I was, and it all goes away...you jump!...and praise the Lord!)  

You've just been sick for 9 months.  I know the rash didn't become prominant right away.  It seemed like some of the symptoms would become evident.  Or they would come and go.  So I got to where I would keep a journal. (actually, I printed out a calendar and wrote the symptoms on the day I had them).  

I don't have lupus in my family either, but my mom has arthritis.  Osteo, although rhematoid hasn't been confirmed, she does have some joints that look like rhematoid.  But nowhere near as bad ad another friend of mine.  Her joints look horrible.  

What the sun does in lupus patients is it causes an immune response to occur in your body, thus causing the ANA level to spike.  I can spend time in the sun (just a short period) and might not feel the effects the next day, but usually the 2nd or 3rd day after sun exposure.  It makes me feel tired, achy, joint pain, weak muscles.  I also get the malar rash from just being outside.  My face gets magenta red.  Then in a day or two, I get skin erruptions.

[ImmuneMystery]

I only had the ANA test once, about 3-4 months ago. There is no lupus in my family and i have never had the Lupus rash but i guess anything is possibly. Do Lupus patients go into remissions? For the past month the majority of my symptoms have goine away. What will going in the sun do for the Lupus test?

[karajo]

How many times did they do an ANA and other antibody type testing?  Autoimmune diseases don't always show up.  Retesting is usually helpful.

To me, it sounds more like lupus.  If they retest your ANA, I would encourage you to spend time in the sun prior to your next ANA.   (about 15 min on a hot day)