Misdiagnosed with Lupus?
Posted , 3 users are following.
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
0 likes, 4 replies
samantha95028
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)
Guest samantha95028
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!
samantha95028 Guest
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.
sky23 samantha95028
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