please help with any ideas

I am a 21 year old female who has had similar health issues. It started @ the age of 7 for me. I had very bad leg and arm pains. The Drs told my parents it was growing pains. With in a year I started having severe stomach pain. They did several tests (endoscopeys, colonoscopeys, swallowing camera capsules, ect.) in which they concluded that I most likely had ulceritive collitus. They put me on medication and told me things should improve. When I was in 6th grade I had an episode of extremely painful abdomen pain and was placed into a children's hospital where they found my appendix was enlarged. They removed it and the pain subsided for about 2 weeks. After that the pain continued and I then received 4 lap surgeries with in 4 years checking for ovarian cysts, endometriosis, ect. They found nothing other than 2 liters of bloody fluid that showed only general inflammation. I was hospitalized several times and was given epidurals to treat the pain. Things settled down for about a year, until my stomach started looking extremely bloated. It continued to look as if I was 7 months pregnant with in weeks. I received an ultrasound which showed my liver was over 3x its normal size. They did an emergency liver biopsy and during this I hemorrhaged. I was air evacuated to UCLA and was there for 5weeks. Things were doing better for about a year other than my joint pain. I had 2 positive ANA tests but also has 2 neg ones. In 2008 I developed sever kidney pain. They thought it was stones or a kidney infection..they did a urinary scope and found almost hive/freckles in my bladder leading up into my kidney. My Dr had never seen them before so he sent them to mayo clinic to see if they could help with a diagnosis. They as well had no idea. I have been told it is a connective tissue disease but they arent sure which auto immune disease it is. In Oct of 2010 I was having speech impediments and some other neurological issues. They did a brain scan just to be cautious and found 2 lesions on my brain, but arent sure what they are from. They are leaning towards lupus because of the organs that have been attacked but If anyone has any advice or ideas to what this could be please let me know. All I want to do is live my life as a normal 21 year old would. I am currently trying to go to school for psychology but with all of these health problems it hasnt been easy. I'm willing to try anything.  

[karajo]

Hi,

There are several things that can cause an ANA to be elevated.  Drs. look at symptoms as well as lab reports.  Autoimmune diseases are tricky in that the labs are not always positive and the symptoms are not always flaring.  So it is like putting lots of puzzle pieces together.  It takes time.  

What was your ANA level when it was positive and the pattern?  You can go back and request all of your lab reports results.  Be sure and keep copies of these on hand.  

I too am leaning toward lupus.  But there is one main symptom of lupus I didn't hear you say and that is joint pain.  Everyone w/ lupus has joint pain.  Most people have a malar rash too, but not everyone.  Another thought is maybe Scleraderma.  It too can affect internal organs.  

Let me know what you think.

[SW21]

Thank you so much for my input. I started with joint pain and it has continued through out my life and progressed to the point where my shoulders, knees, hips, hands, ect. are constantly hurting and get worse with cold weather. They also get red,swollen and hot on some days. Also I'm not sure what my ANA was exactly but I am getting blood work today so I will Def keep updates on what the results show. Thank you so much for your input. It truly means a lot. I can't tell you how much I appreciate it.

[karajo]

It could be lupus or rheumatoid arthritis.  There is a test for RA that I would recommend.  It is called CCP antibody.  Other autoimmune diseases that cause joint pain are sjogren's, hashmoto thyroiditis, (which is assoiciated w/ celiac - one of the symptoms of celiac is joint pain; but I don't think it would cause the swelling and inflammation you are describing).  

Praying for you, ~Kara

[thinkhealthy]

I hope you've found answers by now.
Just a few things I do to help alleviate the pain and inflamation (inflammation) of Lupus.
I drink lots of water.  Eat lots of berries and salads (fresh and raw). Avoid caffeine, black pepper, spicy foods, sugar and dairy. Ginger and mint teas work well for me.
Avoiding sugar is so hard because I love chocolate cakes and cookies. But you will be able to tell the difference when you avoid those things that are not good for you and eat the ones that are good. When you have stayed away from them for a while and ingest them later on, you can tell for sure what effect they have on you.
I try not to eat out or when I do, I ask for a slice of lemon or lime, and use that with some salt on my salads. Most of the time there is black pepper in salad dressings.
I can go weeks without pain. But if I eat something with black pepper for example, my fingers start to tighten up and I get achy all over. At that point, I drink a few glasses of water and that helps very much.
Of course, you should follow your doctor's advice, but you will have fewer flare-ups when you eat right.