I no longer have Lupus??

Okay... was diagnosed with Lupus in 1972, and it destroyed my adrenal glands in 1996; now I am being told I no longer have Lupus... What the heck?  Can this be true?????

[karajo]

Hi Dawn and welcome to MedHelp.

What exactly makes them think you don't have lupus?  I think in 1972 the criteria for a lupus dx was different than what it is today.  And I have heard they plan to change the criteria once again.  

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:
fever
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out
fatigue
muscle pain and weakness
dizziness
poor memory
headaches
poor circulation in fingers and toes
tingling in extremities
diarrhea
bloating
nausea
weight loss
abdominal pain
blurred vision
depression
palpitations
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat
...to name a few

Keep in mind that fibromyalgia, CFS, MS and lymes disease also have similar symptoms.  

[Suda]

Dear Dawn,

I've been diagnosed with SLE or systemic lupus er (spell) the lousy, it just may kill you sort.

Anyway, just a quick note back regarding your question.  I believe you may just be in remission at this time.

I have gone to the doctor's and felt like I was dying and of course, as usual they took tons of blood, the next doctor visit the results of my blood test were all totally normal, no problem.

I have gone to the doctor's and felt rather well on certain days (this has happened over and over again by the way) and they again took blood.  When I returned the next visit, surprise, surprise, my ANA was high, my compliments (sp?) were low, in other words I was having a lupus flare on the very days I felt half way decent.

It's an absolute mystery to me why when I'm feeling halfway decent then, oops! the blood work shows I was having a flare, sometimes a major flare.  Whereas other visits to the doctor, when I feel totally miserable the blood work from that day comes back normal.

I've got to go now, but I don't understand any of this and I've been living with it for years.

Good Luck,

Suda