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Discussion Starter · #1 ·
Okay, so a little medical history. I've been a bit sick for a while now. It started when I was 16 and has been getting progressively worse.
At least once a year I get ulcers in my mouth and down my throat. Every time I get them I go to the doctor and every time they cannot figure out what's causing them. The best one doctor could do to explain was to tell me that my body seemed to be attacking itself by accident.
A few years later I was diagnosed with ADHD.
The next year I was diagnosed with IBS.
The next year I was diagnosed with multiple allergies, including several food allergies, and mild asthma.
I guess I just figured I was really unlucky.

I live in Japan right now, so that seems to be complicating my ability to seek medical advice. My current symptoms are:
joint pain and swelling (particularly in my knees, my neck, and in all of the joints of my right arm);
muscular pain around joints along with muscle spasms;
pressure point near right shoulder blade that I want to press on to relieve pain (ie shiatsu massage), however, if I do, I feel as if I will black out;
sore muscles in neck and significant pain at the very top of the spinal column where the spine meets the skull;
feeling as though my neck were on fire when I try to lie down;
pain in lower back and along spine when lying down;
headaches emanating from the base of the skull;
general fatigue;
fatigue and dizziness (vertigo) after exercising (biking home);
red rash across nose and cheeks;
and a flaky red rash on fingers that comes and goes.

I spoke with my doctor in the US and he said he believed that Lupus was a posibility. I decided to go to a doctor in Japan and he ran a CBC but he wouldn't run an ANA. He said that he doesn't think I have an autoimunne disease because my white blood cell count was normal.

He ran tests for rheumatoid arthritis and strep, and they both came back negative. He gave me medication for the pain (enough for two days), said he couldn't do anything else, and sent me home. The pain is getting worse and now the lymph nodes behind my ears are swollen and painful.

I'm willing to accept the doctor's suggestion that it is not an autoimmune disease, but is it possible to have lupus with a regular white blood cell count? Should I go back to the doctor and make him run more tests? I just don't know how much longer I can deal with the pain. :worried:
 

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Hi Gia_anthony,

Welcome to the forum. You have found a great place with information about lupus, and caring members.

I think maybe going to another doctor getting a second opinion would be good.
Have you taken any pictures of your rashes? Maybe going to a dermatologist might help? What kind of doctor did you see in Japan? Was he a GP or a rheumatologist?
You need to find a rheumatologist that knows lupus.

Here is link on this board that might help you.

http://www.uklupus.co.uk/dxlupus.html

((((hugs)))) Being in pain is no fun.
I hope you get some relief and answers. Sometimes it is a long road to getting diagnois.
Take care,

Lyn
 

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Discussion Starter · #3 ·
I'd love to see another doctor, but I live in a rual area of Japan and I was lucky to find one that speaks English. He's really my only option. So either I wait until I return to the States (August '08) or I go back and plead my case.
 

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Hi there

Welcome to the Forum. Gosh you are in a dilemma arent you? It must be extremely difficult trying to get medical care in your situation. Im not sure what to advise you about that but I wanted to say that your doctor is wrong. You dont have to have low white cell count to have Lupus. While it is one of the classification criteria for Lupus - it is simply one of eleven indicators and only four of these indicators need to be present for Lupus to be diagnosed. See link below

http://www.mayoclinic.com/health/lupus/DS00115/DSECTION=6

Personally I feel your doctor is very remiss in not running the ANA test. I would respectfully suggest that he may be bad for your health:( You have enough symptoms to warrant further investigation in my opinion.

I was struck by your mention of neck pain. A possibility that should also be considered is fibromyalgia which is a condition that can often be present along with Lupus. This is diagnosed using a pressure point test by a Rheumatologist. Heres a link for you to read:

http://www.myalgia.com/Diagnosis/Intro.htm

I would head back to this doctor and tell him that your research shows that a low white blood cell count is not mandatory in an autoimmune condition. Normally I wouldnt recommend that you be so 'up front and straight' with your GP but I think in your situation you have no other option. Either the man is going to do the appropriate tests or he isnt and I think one more trip to him might tip the balance in your favour. You might also need to mention that you have spoken to your doctor in the US and he believes that an autoimmune cause might be a possibility and would therefore appreciate getting the relevant tests ordered.

Other than that I dont know what to say. Start taking note of every symptom you have. Keep a faithful daily diary and things like swollen lymph nodes are important to note. Make sure you tell your doctor in Japan about ANY symptom you have. At the very least you are building a case for a referral to a specialist.

I hope you can get this sorted as otherwise you may well be in for a very rough ride over the next few months:hugbetter: I dont suppose there is any chance of arranging a visit to the US just to get some blood tests? (worst case scenario of course)

Best of luck and let us know how you get on.
Joan:rose:
 

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Discussion Starter · #5 ·
Thanks for all of your advice. It's funny that you mention a low white blood cell count as being an indicator. The doctor said that if I had an autoimmune disease I would have a high white blood cell count and mine is a little low.

I'll definately ask around and see if I can find a Rheumatologist. I've sent my lab results back to my doctor in the US and well see what he thinks of them.

Thanks again.
 
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