Looking for a real diagnosis

[sunni_d89]

Here's a tough one for you. I'm a 26-year-old female. My problems started with abdominal pain, nausea, and severe wrist pain when I was about 8 years old. The doctor diagnosed me as lactose intolerant. Over the years, the nausea and abdominal pain got worse and more frequent. I also developed pain similar to the wrist pain in nearly every other part of my body. At this point, the pain is now in all my joints, muscles, and bones at alternating times. I have light-headedness probably two or three times a week. I've also been an insomniac almost since all this started. I have "heart hiccups" occasionally and chest pain on both sides (though more often on the left), and both are becoming more severe and more frequent (my last one lasted about 5 days). I get frequent headaches that are getting on the verge of migraines. And I have extreme sensitivity to cold. Most annoying is the constant and unbearable fatigue and weakness.

So I've been to about  a million doctors and have been diagnosed and un-diagnosed with everything under the sun. Typically, the tests come back negative for everything. Nonetheless, in addition to being diagnosed as lactose intolerant (which I'm actually not), I've also been told I have Celiac disease (and then told again I didn't have it), Hashimoto's Disease (which two other doctors said absolutely nothing was wrong with my thyroid), Juvenile Arthritis (which also has been proven false), and of course, Chronic Fatigue Syndrome and Fibromyalgia. The most recent test found an unusually high level of ANAs with a speckled and rimmed pattern. The doctor said it looked just like Lupus, but she ran a Lupus panel as well, which came back negative.

Essentially, no one has any idea what's wrong with me. My doctor is urging me to see a rheumatologist, but I can't handle any more tests. Or any more false diagnoses. Is there anyone who has any suggestions at all? Does this ring a bell for anybody else?

Thanks for the help!

[karajo]

Hi Sunni and welcome to MedHelp lupus forum.

I know how frustrating all of this is, but it really sounds like these drs. are taking your symptoms seriously and have not given up on you.  

Just because the other "lupus test" didn't come up positive does not mean you do not have lupus.  Lupus is dx by the symptoms and some of the lab.

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 (inflammation) 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 countor 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:
hair falling out
fatigue
muscle pain and weakness
dizziness
poor memory
headaches
tingling in extremities
diarrhea
bloating
weight loss
abdominal pain
blurred vision
depression
palpitations
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat
...to name a few


Does any of this sound familiar?