Help! No one knows what's going on? Possible lupus?
I am new to this forum but I've been reading other peoples posts often because I'm at a complete loss for what to do...
I'm a 31 year old mother to 3 year old twins, wife, and teacher. Eight years ago, my health plummeted. Ive had more surgeries than I have fingers and many for unknown causes. Eight years ago I started having back pain, neck pain, and overall soreness. I was sick all the time. Then a year after, I started having severe abdominal pain which resulted in 3 laparoscopies in 9 mo and an endometriosis dx. Then I got pregnant (with help) and had my kids. 3 months after I started having heart palpitations, tachycardia, and black out spells where I couldn't see for 1-2 min. It went from happening once every couple of months to 2-3 times per week. I saw a cardiologist who said he didn't see anything structurally wrong with my heart but they implanted a loop recorder. They found that my heart in these moments stops for a few seconds but then by the grace of God it starts beating again. 2 wyears ago I had my appendix removed which they thought was appendicitis but turns out it wasn't (hah! Drs just love to collect organs) but that there were adhesions in my abdominal wall.
I started telling my cardiologist how tired I was like all. The. Time. He did blood tests and my ANA came back positive 1:320. He literally freaked out and said that I needed to see a rheumy ASAP. I couldn't get in with the good one right away so I settled for a rheumy who had no waiting list. Before he even looked at my chart he dismissed me and said I was fine - that ANA is usually nothing and that if he were just to test random ppl on the street he'd get lots of positives. This dr couldn't really examine me bc he was soooo old and he sent me on my way saying it was nothing. I kept my appt with ther other rheumys who were booked out. In the meantime my cardiologist called and said he agreed with the old dr rheumy and that he freaked out over nothing.
So I saw second rheumy on Monday. She asked lots of weird questions - am I sensitive to light? Yes. Am I tired a lot? Yes. Am I sore in the morning? Yes I'm sore all the time but more in the morning. Do my fingers turn white, red or blue? Yes, doesn't everybody have that? She did a physical exam and pressed on places that were so sore that I nearly leapt off her table multiple times. She said she wanted to do blood work and to see me in 2 weeks. She said that she thinks it might be fibromyalgia, a connective tissue disease, or lupus in a very mild form.
Now I don't know what to do. Here are my results that keep pinging in my email:
Ana with reflex >=1:640 (it was 1:320 two weeks ago)
C3 is low at 95 ( standard for my lab is 98)
Crp is 4.0 (it was 0.5 two weeks ago)
The rest was normal.
Symptoms: fatigue, joint soreness, finger/wrist weakness, chest pain is really getting bad, blackouts every once in a while, hair loss, fevers randomly when no one else in my house gets sick, migraines, mouth ulcers
Questions I have?
What does >= mean?
Why would my Ana go up?
Is this nothing like the first rheumy said?
Can a positive Ana be caused by stress?
What is mild lupus?
Should I keep fighting for answers or drop it?
Sorry this is so long. I appreciate any feedback.
ANA alone isnt really reason for a PCP/GP to freak out, but they often do. They browse over it in med school and the statistics are lupus has %95 chance of ANA being positive. GPs seem to remember that, but also forget ANA is positive in up to %40 of the healthy population
Its a sensitive test, but not specific by any means. However at a certain point (or titer) it becomes less & less likely to be a false positive in a healthy person (around 1:160 the percentage drops greatly). however there are still healthy people with high ANA titers.
So as a test, it should only be taken in context of symptoms. Now one goes to a rheumatologist, and some dismiss all but the sickest, others believe in early treatment & watching, etc etc etc.. it becomes a smorgasbord of confusion.
ANA is titered out by real people, so it is subjective. It says greater than or equal to because the particular lab tech saw no more ANA fluorescence after 1:640 dilution, however it could be higher with different eyes, or with a different station. The level of ANA does not indicate disease activity, to put your mind at rest. It just means the higher it is the LESS likely it is to be a false positive. ANA levels fluctuate up & down, even in the healthy who have positive ANA. ANA isnt caused by stress, but it can be elevated with certain viri.
Is it nothing? It *could* be nothing. It could be something. Im not a doctor. I can say if you are having symptoms and feeling ill, to stick with a rheumatologist who will at LEAST follow up and watch over you.
Mild lupus is usually classified as no organ involvement, no major skin involvement. Treatment can be pretty straightforward plaquenil, which is relatively safe and requires yearly eye exams. If it works in mild lupus, it can ward off the aches and pains and other symptoms.
Fighting for answers? Maybe not so much. It can take YEARS to get answers, even in the very ill. You should fight for proper care, someone you trust, to be followed, etc etc. If rheumy #2 is watching you, good. Stick with her. The major reason I say this is if you do have mild lupus, things can escalate quickly (rarely) but it would really be horrible to have to go through a whole new referral process while being really sick. If your symptoms escalate in a few months its much preferable to just call a rheumatologist you're already seeing and get seen asap.
Could it just be fibromyalgia, possibly... Fibro is very painful, and debilitating, but its not life threatening. MANY people are initially diagnosed with fibro, who turn out later on to have an auto immune, but that doesnt mean it will turn out that way. I was initially diagnosed with fibro, then things escalated REALLY quickly with my organs, even though my pain levels had reduced. I still have no official diagnosis on paper, but my rheumatologist is very concerned. My first rheum had sent me out the door with the "you're healthy" pat on the back only 7 weeks prior. I was able to get ultra fast referrals because I had dsdna positive but many people have to wait months...
on the low c3 specifically... Low c3 & c4 is seen in lupus. BUT - some peoples baseline is generally low. Others, very high. so c3 & c4 need to be watched over time in context with symptoms to see where someones baseline lies. Yours isnt insanely low range wise, but for you could be very low (or very high) or that could be a totally normal number for you... I know, its confusing! Another reason to be watched.
CRP is a marker of inflammation, depending on your labs range (some are 0-1 others up to 10). CRP is usually not elevated in lupus, but SED rate is. I say usually, but there are tons of people who dont follow the "usual". In example, I swell up like a balloon on & off and my SED & CRP are always ultra low.
So my advice, is if rheumy #2 wants to continue following you, allow her. It may be nothing, it may be something. Its good to have someone in your corner in case it is something. Try not to stress in the meantime. I think all my stress from the first rheum dismissing me is what led to me majorly flaring.
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