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Getting A Diagnosis

Getting A Diagnosis

Hi all
I am having an issue with my PCP not taking my complaints seriously. I went in with complaints of joint pain, fatigue, low-grade fevers, hair loss, and some random face and eye area rashes. She drew the following labs which I included results with as well:

ESR (elevated at 45)
Uric acid (within normal limits)
TSH/thyroid (normal)
Rheumatoid Factor (negative)
ANA (positive 1:80, speckled pattern)

She did not do a CBC, but the past several times I’ve had one done my hemoglobin and… read more

A MyLupusTeam Member said:

Was able to get in to see a different doctor who is covering for my PCP while she’s on vacation. She ordered additional labs as well as a rheum referral! At least I feel as if I’m being taken seriously now. Hoping for answers soon! Thanks all for your replies and prayers! ❤️

posted over 2 years ago
A MyLupusTeam Member said:

Np. It is overwhelmingly frustrating. But you're right- you are not crazy. That's the spirit☺ If you can find one near you I've actually had way more luck with nurse practitioners as my PCP than doctors. Especially when you have an idea of what's wrong with you and are seeking referrals. At least that's been my experience.

posted over 2 years ago
A MyLupusTeam Member said:

Reading your story made me mentally relive the time before my diagnosis. I jumped from doctor to doctor and they all said the same crap to me, "Your tests are NORMAL." I didn't even have a positive ANA at the time so they took me even less seriously. But I was always tired, my weight was just melting off despite normal eating (I was 100 pounds and my ribs were showing through), my body hurt ALL over, hair falling out like rain, random rashes, face hot and red,.etc etc! You need to seek out a rheumatologist who specializes in Lupus. General practitioners are beyond useless.

posted over 2 years ago
A MyLupusTeam Member said:

That’s a bit of a weird list

The one I’m familiar with is a list of 11. It’s been updated now to a list of 17 but I don’t remember all 17 off hand

Many are included on what you posted tho but some are missing

Oral or nasal ulcers (of a certain type to rule out cold sores etc)

Low red or white blood cells or platelets. Again, the specific count matters

Fluid on the heart or lungs

Kidney damage from Lupus or protein in urine


Joint swelling and pain without joint damage (to rule out arthritis)

Photosensitivity. Sun exposure causing rashes, flares or vascular issues

Butterfly rash

Discoid lesions

ANA positive

DsDNA positive or positive for another Lupus specific antibody

edited, originally posted over 2 years ago
A MyLupusTeam Member said:

While there are guidelines to lupus those guidelines for a diagnosis are very strict and often cause confusion

For instance, the 11 criteria we read lists: low platelets, low RBC, positive ANA or lung problems and butterfly rash, etc

But the actual criteria is very specific. Platelets have to be under 100,000 to qualify as meeting Lupus criteria. A rash has to be very specific to be counted. (Many here encounter that problem of a rash that is dismissed) Lung problems also have to be specific, like image confirmed pleurisy. Etc. So it can be very frustrating when you exhibit many of the symptoms but they still don’t meet the qualifications

As for ANA, 1:80 is considered positive but “clinically insignificant“. Doctors will usually do some further testing with this result but by itself it is inconclusive since that low a titer is found in healthy people, or with some infections or from hypothyroidism. When it gets up to 1:320 a doctor is usually comfortable in confirming an autoimmune disease as its cause, even if they don’t know which disease specifically

Have you had your thyroid checked? Hypothyroid causes many of the same symptoms and doctors need to rule that out first before even considering other possibilities

A lupus diagnosis is one of elimination. Since there’s really no definitive test they have to rule out every other disease that could be causing similar issues. Which is why diagnosis on average take many years (6 Years I’ve read)

It is very frustrating and I’m sure you’ll find a lot of people who sympathize with you here. The best advise I got was “be your own advocate and fight for your care.” But keep an open mind. Lupus is known has the “imitator” because the symptoms are like so many other diseases. It might be Lupus or any number of different things. The goal is to get you feeling better! So while I wouldn’t push towards a particular diagnosis, I would continue to ask for further testing. An endocrinologist is probably the best next step

edited, originally posted over 2 years ago
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