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I am so sorry to hear what you are going thru!!!! I know that your stress level must be to the max- and that doesn't help anthing you have! Look at fibromyalgia descriptions- FM is never diagnosed by test results, in fact often mimics lupus but without theblab confirmation.
Don't get discouraged. You have something physical going on and it is just going to take time. Be glad that your dr is keeping you well informed. also, don't forget that you may be that 10%- someone has to have lupus without lab conformation or there wouldn't be a %-age for that occurrence.
When the dr said you were your ANA was neg- what were the numbers? the numbers represent a ratio- a dilution factor. it would be represented as say: 1:160 or 1:640 etc. Most labs, I understand, consider anything over 1:180 "positive". HOWEVER- not everyone has a high ratio that has lupus.
I know that you are scared and panicky cause you ahve so much going on and no answers. You have people working on your case- that's a good thing. See if you can break it down. Sometimes writing a list helps calm and organize your thoughts. Like:
lumps
initial diag
doctor working on problem
1st suggestion of treatment
1st action
addl treatment
prognosis
follow-up

Do this for each problem- it may help to see things more clearly and not feel so overwhelmed. You'll also be able to see where progress is being made.
Your body is a big mystery to the dr- he has to be a detective. He's "hired help" and a member of a team of experts that you've gathered to solve your medical problems.
You are not a victim although you feel victimized and betrayed by your body right now- patient and victim are not the same thing. However patience and patient go hand in hand. :-)
I was just diagnosed with FM in additional to the other diagnoses and am still amazed at how complicated fibromyalgia is. Actually, it is more frustrating to have that because there is nothing in reports/tests/etc that actually SHOW that you have it- it's all subjection and people not experienced with it dismiss FM as a nut-case claim. I have a friend who told me that she had FM last year- I really thought she was just a hypochondriac. Well, I stand corrected now and will be taalking to her this week to apologize for not coming to her aid. My ignorance was not bliss for her!
hugs to you
jeri





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