Misdiagnosed with Lupus?

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Hi all, I wanted to get your opinion on some symptoms/blood work results. I've been healthy my whole

life except for seasonal allergies, dry eyes and dry mouth. No high blood pressure, no high cholesterol, no diabetes, non-smoker, no family history of autoimmune disorders. However, back in April 2013 I went to my primary doctor because I was having some these painful electric-like shocks in my feet. Eventually I was referred to a Rheumatologist who diagnosed me with Sjogren's and placed me on Hydroxychlorquine 200 mg twice per day. In late 2015 I started having bad gastro symptoms--vomitting and severe indigestion. A upper GI and biopsy revealed chronic gastritis—please note I was also under a lot of stress

at this time with full-time college and full-time job. In October 2016 I started having severe joint pain in my hands, it was difficult to hold so much as a glass or plate. My primary doctor prescribed me medicine she thought would help with the pain/inflammation. Several days after taking the medication the

left side of my face went numb. It feels almost like it fell asleep or when you get Novocain from the dentist, along with a "crawling" feeling. No pain at all. My primary doctor ordered a MRI to check for MS. The MRI was perfectly normal minus "chronic sinusitis". I also started experiencing Raynaud’s around this time. My primary doctor referred me to a neurologist who diagnosed me with Trigeminal Neuralgia. The sensation in my face never returned. In December 2016 I started seeing a new Rheumatologist who diagnosed me with Lupus, not Sjogren's like my other doctor. She started me on Hydroxychlorquine 200 mg 3x/day and Imuran 2x/day. By the end of 2017 she started weaning me off of Imuran. By the beginning of 2018 I was only taking Hydroxychloroquine 200mg 3x/day and she began weaning me off that as well. By the beginning of 2019 I was only taking Hydroxychloroquine 200mg 1x/day. Today I only take 1 tablet per day of the Hydroxychloroquine. I've been seeing my Rheumatologist ever since 2016 but have some discrepancies as to whether or not I actually have Lupus and maybe I have Sjogren’s instead. Please see below for blood work results over the years. Sorry for the long post!

Note: I do not have a butterfly rash or any other rashes. I do not have sensitivity to sunlight (I actually rarely burn and tan super fast!)

April 2013 (shocks in feet)

SS-A POSITIVE

SS-B NEGATIVE

ANA-Direct: POSITIVE

Anti-DNA (DS): Negative

RNP: NEGATIVE

SM Antibody: NEGATIVE

RA Factor: NEGATIVE

BUN: HIGH Range 6-20 (Result 21)

BUN/Creatinine Ratio: HIGH

Range 8-20 (Result 33)

May 2013-June 2015 ALL BLOOD WORK NORMAL. Shocks in feet

gone.

December 2015 (gastro problems):

SED RATE: HIGH

ANA: POSITIVE (homogenous)

ANA Titer: HIGH (1:1280)

RF: NORMAL

SM Antibody: NEGATIVE

SM/RNP: POSITIVE

SS-A: POSITIVE

SS-B: NEGATIVE

Lupus Coagulant: NEGATIVE

DNA-DS: NEGATIVE

RF: NEGATIVE

C-REACTIVE: NORMAL

November 2016 (Gastro problems gone. Now have joint pain,

left side facial numbness, and Raynaud’s)

C-Reactive: HIGH

SED Rate: NORMAL

DNA-DS: POSITIVE

December 2016 (still have joint pain, left side facial numbness,

and Raynaud’s)

ANA: POSITIVE (Speckled)

Titer: HIGH (1.1280)

SS-A: POSITIVE

SS-B: NEGATIVE

Vitamin D: LOW

SM/RNP: POSITIVE

SM: NEGATIVE

January 2017: (Joint pain gone, left side facial numbness and

Raynaud’s still present. No other new symptoms)

RNP: POSITIVE

SED: NORMAL

DNA-DS: NEGATIVE

C-Reactive: NORMAL

February 2017: (left side facial numbness and Raynaud’s

still present. No other symptoms.)

SED: NORMAL

DNA-DS: NEGATIVE

C -Reactive: NORMAL

ALT: HIGH

AST: HIGH

MCHC-LOW

Platelets: HIGH

Monocytes, lymphocytes, eosinophils: LOW

RDW: HIGH

April 2017: (left side facial numbness and Raynaud’s still

present. No other symptoms.)

SED: NORMAL

DNA-DS: NEGATIVE

C -Reactive: NORMAL

Platelets: HIGH

RDW: HIGH

ALT: HIGH

July 2017 (left side facial numbness and Raynaud’s still

present. No other symptoms.)

SED: NORMAL

DNA-DS: NEGATIVE

C -Reactive: NORMAL

January 2018: (left side facial numbness and Raynaud’s still

present. No other symptoms.)

SED: NORMAL

DNA-DS: NEGATIVE

C -Reactive: NORMAL

AST: HIGH

ALT: HIGH

July 2018: (left side facial numbness and Raynaud’s still

present. No other symptoms.)

WBC-LOW

RBC-LOW

MCV: HIGH

Carbon Dioxide, Total: LOW

August 2018: (left side facial numbness and Raynaud’s still

present. No other symptoms.)

WBC: LOW

MCV: High

January 2019: (left side facial numbness and Raynaud’s still

present. No other symptoms.)

SED: NORMAL

DNA-DS: NEGATIVE

C -Reactive: NORMAL

WBC: LOW

November 2019: (left side facial numbness and Raynaud’s

still present. No other symptoms.)

SED: NORMAL

DNA-DS: NEGATIVE

C-Reactive: NORMAL

ALL other CBC tests NORMAL

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4 Replies

  • Posted

    Note: If a test was high one year and then isn't listed the following year that means the test is now within normal limits.

    I.E. In January 2018 I had a high ALT/AST but it isn't listed in July 2018 (this means my ALT/AST were not high anymore)

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  • Posted

    I know this is unrelated to your question but please make sure you are having your eyes checked while taking this medication. Typically while taking this med you should have your eyes checked and a retina OCT. Also you can have Lupus without the typical rash. Best of Luck!

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    • Posted

      I have an eye exam once per year to check my eyes. Both my Rheumatologist and eye doctor are not concerned since 1. I'm not on a high dose of hydroxychloroquine and 2. have only been on it for 3 years. They both said it only becomes a higher risk when you're taking a high dosage and have been taking it for 5+ years.

      I am also aware that not all Lupus patients present with a facial rash.

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  • Posted

    hi..I have some tick related infections and recognise some of your symptoms, although your ANA is positive might be an idea to double check for Lyme along with a full coinfection screen (you have to ask for that one or it will not be done) My ANA is also speckled although this now could be dermatomyositis(which can be a result of infection) best of luck.xxxxx

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