guess i'm not alone...

26 year old female....can't believe i'm posting something but what the hell.  my ANA has been positive and negative on and off for about 4 years now.  i first went to a rheumatologist when i was 22...he wasn't sure what was wrong, the only test that came back somewhat out of the norm was the ANA, which ony had a titer of 1:80...just barely positive.  i had gone to him for some jasymmetric joint pain and just all around pain, i remember telling him i felt like my insides were on fire, just red.  i went through [hases when it hurt to be touched, i could never sleep, putting clothes on was excruciating, i would wake up from a fitful sleep only to wonder how i was going to make it through the day. never heard back about my results and only recently found out about the positive ANA since i got a records release....4 years later.  i realize a 1:80 titer is barely positive in most  cases, but i ws clearly having joint pain and it should have been folllowed up on.  the problem is, i was too young to know how aggressive to be.  my symptoms were chalked up to anxiety, depression, both.  3 yeas ago i had a large cyst removed from my right ovary, i clearly remember my doctor saying she found no endometriosis during the cystectomy.  a week later i was back at the gyno in horrific right-sided pain, another small cyst had formed, they made me "comfortable" and my week off from work turned into 6 weeks.  i called the office everyday with the most severe right-sided pain, even worse than what i started off with.  i was eventually put on several birth controls, and finally lupron to treat endometriosis (although it was undetetcable--i felt i was trying to be appeased)...which put me into menopause but never relieved my symptoms.  i would call every other day for an appointment, i'm sure this office thought i was insane.  finally i just gave up and dealt with the pain, it's gotten a little more tolerable, but my gut knows it's not right.  during this time, my gallbladder started to bother me.  i would have heartburn almost daily, be uncomfortably full after only a bite or so of food, my stools turned gray, i lost some weight.  my liver enzymes were slightly elevated.  an ultrasound showed some enlargement of the bile ducts for a person of my age, but nothing major.  i was referred to a gastroenterologist, but i was too scared to have an endo, which i knew was probably coming...my big mistake.  i tested negative for celiac disease twice, once being this summer.  then suddenly i started rapidly losing weight...despite trying to force feed myself.  i lost over 30 lbs in less than a year.  i never even knew it was happening, i was gong through a divorce at the time and just assumed my loss was part of the process.  i would get very offended when people would comment on my weight and chalk it up to the "divorce diet" until i saw a picture of myself ad saw my collarbone jutting out.  i am 5'4", small frame and am trying to hang on to the 110 lbs that i have but i have to force feed myself in order to do so.  i am 26, but feel like i'm 86...i do not want to be this way any longer.  i too attributed my symptoms to depression, but as someone close to me pointed out--they are real....no one would choose to feel this way.  i would love to have a carefree 26 year old life back.  for my joint pain, which affects any joint you can think of, i have tried an NSAID there is, celebrex, heat and cold obviously, lidocaine patches (yeah right), voltaren with misoprostil, prednisone, i'm sure there are others to list....narcotics, muscle relaxers...i feel like i'm a science experiment and i always hope this new prescripstion i'm getting will ne my miracle drug...but sadly it never is.  i have severe neck and spinal pain that affects my right into both sides of my groin, nothing has helped with this.  i recently went to another rheumatologist and mentioned randomly that i feel like and organ is digging into my ribs, so he tested me for ASCA...it was the last thing i dreamed that would come back positive and it did....IgG was 160 and IgA was 39.  of course he is on vacation and i am just wanting answers.  i know this can be a serological marker for UC or Crohn's and was looking for any input.  i do go to the bathroom quite a bit, sometimes 6 times before 10 am! but i was loking for any similar stories or input.  also, my ANCA came back negative which was a relief or i could be looking at autoimmune hepatitis.  i have always been a leader at work, but i need to sit or lie down any chance i get, whatever this is, it's stealing my life away slowly and i'm starting to realize i'm not a depressed, helpless human being...even though i am feeling that way now!  this is not the life i pictured for myself...i used to be a bright, bubbly, fun person...and now i dread the thought of turning over in bed or walking up stairs because it is that painful.  i also thought it was worth mentioning that for the first time in years my vitamin d came back ow, which it never has.....please tell me i am not alone....

[TrudieC]

You will make it through this.  You have learned the hardest lesson - we know our bodies and have to push for what we need.  

I was diagnosed with UC when I was 21 (I'm 47 now) and it wasn't bad until about 7 years into it when I was living a way too stressful life and had a bad gastro doctor who didn't treat me right.  I ended up with a perforated bowel and had surgery to remove my colon and make me a J-pouch so I can have function.  With UC this is a cure but you do have to watch some of what you eat and you go to the bathroom about 8 times a day.  My son was diagnosed with UC a couple of years ago but he learned from my experience and gets to the doctor if it acts up.  There are so many better treatments out there now and he is in remission due to immune suppressants.

Later in life I became hypothyroid (another auto-immune issue) and in the last few years I was diagnosed with fibromyalgia and with developing lupus (my ANA was like yours).  You don't have to live a life of pain.  It can take a long time with these diseases to get a diagnosis.  Always tell your rheumatologist everything and you really need to have all the tests your gastro doc suggests.  

Good luck with everything.