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Unknown Autoimmune Disease

I'm sure 100 people a day post questions similar to mine but I am at my wits end with searching and asking for answers.

I am a 21 year old female.  I am 5'0 and 105 lbs.  

I will start from the begining and I'm sorry if this ends up being longer than I anticipated.  Everything started when I was 12 years old.  I ended up really sick and out of school for a week which was something very rare for me at that time.  I went to the doctor and she told me it was just a virus and it would pass soon.  A month or two after this virus my right knee started hurting.  It hurt so bad I would go a few days at a time without sleep.  As pathetic as it sounds I would cry every night and just feel sorry for myself.  The pain was so intense I couldnt eat and went from 90 lbs down to 70 lbs in a matter of a few months.  I never told my parents because I thought it would go away on it's own.  They found out maybe 6 months into the pain because I developed a limp.  My parents suggested I see a doctor but I refused.  Being 12 years old my first thought was "omg they're gonna take my leg" so I decided to just suck it up and deal with it.  Finally, when I was 14 I realized I couldnt go through life with that pain anymore and broke down and went to the doctor.  When I visited my doctor he was pretty upset with me.  I had never really looked at my knee nor would I let anyone else look at it.  He pointed out it was twice the size of the other knee and quite purple.  He said to just ice it and take ibuprophen and see what happened.  I was taking, I believe, 600mg of ibuprophen every 6 hours and icing my knee for 30 minutes 3 times a day.  After a few weeks the pain subsided and didnt bother me again until I was 16.  When I was 16 the pain came back but this time was in both knees.  I went to a different doctor this time plus and orthopediest and physical therapist.  My PCP told me it was just osgood-schlatter and to see the orthopediest.  The ortho told me it was my feet causing the problems (As well as RLS for some reason) and the physical therapist told me it was actually my hips causing the problem.  Pretty confusing.  When I was 18 my right hand started bothering me.  I'm right handed and unfortunately I now refer to it as my stupid hand.  I just cant control it like I should be able to.  Plus that hand hurts more than anything.  Between the ages of 18 and 21 whatever it is has spread to both knees, my right ankle, both hands, both wrists, and my right elbow.  

In november of 2009 I started feeling really weak and turned extremely pale so I went to an urgent care clinic.  While I was there I told him everything and he suggested lupus, RA, and lyme disease.  He did a rheumatoid panel and an ANA.  Everything was negative/normal except the ANA which was 1:320 homogeneous pattern.  I went to see a rheumatologist in february of 2010 and he repeated the ANA, performed a lupus panel, a rheumatoid panel and tested for sjogrens, and wegeners (I think that's what it is called).  All were normal except the ANA was still the same.  He also did an x-ray on my right hand that showed no signs of arthritis.  All he did was try to load me up on pain meds.  I have a high pain tolerance and I have dealt with the pain for this long so I think I can go longer without meds.  Another doctor suggested I get an MRI on my brain to rule out MS and the MRI was normal.  I also, finally had a western blot performed for lyme and it was negative.

I'm just really needing some ideas as to what can be going on.  Whatever this is, is effecting my life.  I have no energy at all and it is so easy to wear myself out.  Also, I have an intolerance to heat it's embarrassing.  Just being in a car with the windows down my cheeks and chin turn bright red and almost look bumpy plus just randomly that area between my neck and chest turns bright red.  I try to avoid the heat as much as possible but it's impossible where I live.

But thank you for reading this.  Any ideas are greatly appreciated.  I'm going to a new doctor tomorrow and hopefully he will have some ideas.
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434278 tn?1324709825
Hi and welcome to the forum.

It really does sound like this could be lupus.  

There are 11 criteria for a lupus dx.  You must have at least 4 of the 11 to recieve a dx.

They are:
1. malar rash over cheeks (butterfly rash)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash
4. oral and nose ulcers
5. arthritis
6. serositis - inflamation of the lining of the lung or heart
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood count or lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test

Other symptoms are:
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out
muscle pain and weakness
poor memory
poor circulation in fingers and toes
tingling in extremities
weight loss
abdominal pain
blurred vision
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat
...to name a few

The magenta color on the cheeks due to sun exposure is very tipical of lupus.  

Let me know how many of the 11 you have.

Be sure and spend some time in the sun prior to your dr. appt tommorrow.  About 10 min right before you walk through the door should be plenty.  What this will do is cause your ANA to spike really high if you have lupus.  If you don't it won't affect it.  320 is what the consider not all that high, but definitely not negative.
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