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Do you have to have ANA to have lupus?
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Do you have to have ANA to have lupus?

A while back, I was diagnosed with lupus. I had all the symptoms but the blood work. I just saw a rheumatologist, and my ANA is negative. Does that mean I can't have lupus?
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434278_tn?1324709825
I know you are going through a lot of symptoms.  Hopefully you are hanging in there w/ your dr. to work through all of this.  

The way a lupus dx goes is, if you have 4 out of the 11 criteria for lupus then lupus is probable.  

1. malar rash over cheeks (butterfly rash) (74%)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash (50%)
4. oral and nose ulcers
5. arthritis (95%)
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 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:
fever (90-95%)
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out (27%)
fatigue (90%)
muscle pain and weakness (90%)
dizziness
poor memory
headaches
poor circulation in fingers and toes
tingling in extremities
diarrhea
bloating
nausea
weight loss
blurred vision
depression
palpitations
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat
lymph node swelling (50%)
...to name a few

Sometimes when someone is "looking" like they have lupus, but not all the puzzle pieces are falling into place, they will go ahead and try the patient on medicine to "see" if they help them.  Has your dr. tried prednisone?  It also sounds like you are dealing w/ rheumatic fever.  Did you have strep throat that was untreated?  This is really a rare disease these days.

Many of your symptoms sound like lupus, but they could also be associated w/ rhematic fever.  How long have you been having symptoms?  Are you studying to be a dr.  You sure do use a lot of medical terms to be as young as you are.
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434278_tn?1324709825
I know you are going through a lot of symptoms.  Hopefully you are hanging in there w/ your dr. to work through all of this.  

The way a lupus dx goes is, if you have 4 out of the 11 criteria for lupus then lupus is probable.  

1. malar rash over cheeks (butterfly rash) (74%)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash (50%)
4. oral and nose ulcers
5. arthritis (95%)
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 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:
fever (90-95%)
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out (27%)
fatigue (90%)
muscle pain and weakness (90%)
dizziness
poor memory
headaches
poor circulation in fingers and toes
tingling in extremities
diarrhea
bloating
nausea
weight loss
blurred vision
depression
palpitations
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat
lymph node swelling (50%)
...to name a few

Sometimes when someone is "looking" like they have lupus, but not all the puzzle pieces are falling into place, they will go ahead and try the patient on medicine to "see" if they help them.  Has your dr. tried prednisone?  It also sounds like you are dealing w/ rheumatic fever.  Did you have strep throat that was untreated?  This is really a rare disease these days.

Many of your symptoms sound like lupus, but they could also be associated w/ rhematic fever.  How long have you been having symptoms?  Are you studying to be a dr.  You sure do use a lot of medical terms to be as young as you are.
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Avatar_m_tn
No, My doctor hasn't tried presidone. I am living in a foreign country, and rheumatic fever happens more often here. I am studying to be a doctor, thanks! The symptoms, on and off for about 4 to 5 months, straight symptoms for 1 1/2.
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434278_tn?1324709825
So, could these symptoms be due to the rheumatic fever?  From what I found on rheumatic fever the first symptom is uncontrollable twitching of muscles or vague pain in the muscles.  Pain then becomes intense.  Joints become red, painful and swollen.  There is a fever and skin rash.  Inflammation can cause the heart valves to become scared and defective.  The joint pain moves from one joint to another.  

Let me know what you think.

I'm praying for you, Kara
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Avatar_m_tn
None of those really fit. I've had chills, but no fever. Not red or swollen, just painful. It happened all of a sudden, not twitching first. The twitching is only in my eye. The skin rash is different than R.F, it looks like 3 purple dots forming a triangle, 2 on top, 3 on bottom, and it switches palces. I really don't think it's R.F, because i had a straight lupus diagnosis, but when my ANA suddently dropped, they forgot the symptoms and the Anti-Sm (Smith) antibody, and just said " You don't have ANA, it must be R.F!"  All of this started when I was 10, the same year I had that thing that's like croup but not, and mono. Could these be related?
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434278_tn?1324709825
Oh, I see, you once had a positive ANA and anti-sm and then it went neg.  Were they giving you any medicine?


I actually get the tiangle of bruises.  I know exactly what you are talking about.  Every single time I got them, I was under a lot of stress.  They were always on my upper arm, but they would be in various places. I always wondered if they were connected to maybe antiphospholipid antibody or platlets.  They haven't tested me for that in 2 years.  I don't run to he dr. over everything.  I just mention it the next time I'm in there.  Crazy stuff happens, then they won't for months on end.  

So what was your ANA and anti sm when they were up? And what was the pattern of the ANA?
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Avatar_m_tn
Actually, I've had the anti-sm every time. No, they haven't tried any medicines. Around 900-1500 for the ANA, the SM, 600 i think? It wasn't high enough for them to forget about the one negative ANA. The ANA pattern was nuclear. And I don't go running to the doctor, I've only seen a doctor 3 times in 5 months for this.
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Avatar_m_tn
I mean anti sm
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434278_tn?1324709825
Help me understand... in America (or when they check my ANA) it is read like 1:40 or 1:80, 1:160 1:320.  It doubles every time they wash the serum in the lab and still see antibodies.  What does the 900-1500 mean.  I haven't been able to find any info on reading like this.  What is considered high.... or really high.  My ANA was 1:2560 one time.  But now that I'm on med. it reads much lower.  

Nucleolar pattern is not often seen in SLE and suggest scleroderma. (according to "The Lupus Book" by Dr. Wallace.)
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Avatar_m_tn
the 900- 1500 is a range, because in my left arm it was 1:460 and in my right arm it was 9:20 so what it could "go to" and still be counted as my ANA is 900-1500. I don't know if that's high. I should have posted this earlier- I asked my mom- we don't know my ANA pattern. I guess i just thought it was that or something.
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434278_tn?1324709825
I've just never heard of readings like that.   If you find out any more info I would love for you to pass that info along.  It would be good for you guys to get a copy of your lab.  
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