Does this sound like Lupus?

Posted , 3 users are following.

Hi All!

I have been sick for seven months now. I've seen a primary doctor, two endocrinologists, and a cardiologist so far. I'm having a very hard time getting my primary to take me seriously, and a cardiologist I saw yesterday told me that after spending 15 minutes with me, he could tell that I'm an "upright person" and wrote my symptoms off as anxiety. Here are some test results and diagnoses I've had:

- Low titer positive ANA with speckled pattern

- high rheumatoid factor

- confirmed Hashimoto's with normal thyroid function, so endo doesn't think that's causing my symptoms

- low cortisol for two blood tests and a saliva test, but normal response to ACTH Stimulation test which ruled out Addison's

Here is my ever-rotating list:

- crippling fatigue

- bouts of tachycardia not exceeding 130bpm when I'm NOT anxious

- horrible hives that leave bruises and broken capillaries for about 5 days after the hives have gone (mainly on lower trunk and extremities, but all over as well, and worsened by sitting too close to heaters)

- joint pain in hips, knees, elbows without pressure points or swelling, but with warmth to touch

- random neuropathy, pins and needles/electric shock sensations

- rash on my chest that doesn't itch when I'm exposed to sunlight, heat, or intense emotions of any kind (ongoing since teenage years)

- random lowgrade fevers that last as few as a couple hours or as long as 1-2 days

- sore throat and flu like symptoms if I don't get enough sleep

- trouble swallowing

- mildly enhanced blood pressure

- loose stools

- muscle twitching, pain, and weakness

- winded easily

- occasional vision issues

All of these symptoms come and go. When I was 13, I had a bout of mono which triggered an autoimmune response that left me paralyzed for 6 months. My neurologist suspected either Gullian-Barre or Post Viral Ataxia, but couldn't differentiate between the two as I was too old for PVA and my symptoms lasted much longer than usual, but I didn't have the hallmark neuropathy associated with GB. He took a wait and see approach to my recovery and after 6 months of physical therapy, I recovered fully. He did tell my mother to expect autoimmune disease to show up at some point in the future, or that my disease could come back out of remission.

I'm positive all of this is related but doctors keep blowing me off. I know you have all been through the painstaking process of getting a diagnosis, and I seek major comfort in your advice and wisdom. Any and all is GREATLY appreciated!

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  • Posted

    I should also mention that my CRP was normal which ruled out RA
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  • Posted

    Nope! It doesn't sound a little like lupus at all, it sounds EXACTLY like systemic lupus!  (lol)  A good rheumatologist will consider your symptoms along with your labs to diagnose you.  You know the criteria I'm sure- it's 4 of these 11 - 

    The “Eleven Criteria”

    Malar rash: butterfly-shaped rash across cheeks and nose

    Discoid (skin) rash: raised red patches

    Photosensitivity: skin rash as result of unusual reaction to sunlight

    Mouth or nose ulcers: usually painless

    Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.

    Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)

    Neurologic disorder: seizures and/or psychosis

    Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine

    Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count

    Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin

    Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. A special note on the ANA test

    There's also such a thing as seronegative lupus and seronegative RA.  Ask your doc to give you the direct ANA Lupus Panel.  It will give you a breakdown of your autoantibodies and can be very helpful diagnosing lupus- sometimes the titer test (the one you had) can miss the proteins.

    Most important thing tho is that you are being TREATED.. Steroids as needed for flares, plaquenil (the lupus gold standard) and steroid creams for rashes as needed.  Treating the underlying disease (likely lupus) is paramount to helping control your symptoms.. (Benlysta, Methotrexate, Cellcept, Etc)  If your GP isn't sure-ask for a referral to a rheumatologist or even an immunologist who will hopefully take your symptoms into consideration.  Especially since you have Hashimoto's..ya know autoimmune diseases like to overlap each other..  

    And do NOT give up.  Doctors are like day and're likely just one appointment away (something like that ya hope) from seeing the RIGHT doctor who will diagnose you and get you started on a regimen of medications that work for YOU and will help you with your symptoms.  Treating the underlying disease is REALLY don't take NO for an answer!  If you don't advocate for your health, noone will...

    Btw- we have alot of the same symptoms...chest rashes, hives, photosensitivity, neuropathies, etc...I feel your pain!  Anyway- so nice to meet you!  I'm Julie  :D

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    • Posted

      I love your comment about "one appointment away." It has been so discouraging and exhausting to visit doctor after doctor redescribing all of my symptoms without a resolution! I will keep meditating on "one appointment away!"

      I seem to meet 7 out of those 11 criteria. I started getting mouth ulcers this week, and I didn't even consider it a symptom! I got one on my tongue and then one on my cheek a few days later. They don't really hurt per say but they're uncomfortable because they are inflamed so I'm aware of them, if that makes sense!

      Thank you for your encouragement, and I will ask about the Lupus panel!

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  • Posted

    I could'nt tell you but i'm sorry your going through this and doctors keep brushing you off just don't give up trying to get a diagnose and don't let them make you believe that your symptoms aren't real sometimes they have to put themselves in our shoes.  Hope you find answers soon.

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