Could this be lupus?

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lrm22
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 8/17/2016 7:44 AM (GMT -6)   
In May 2008, I woke up and my lower leg felt kind of numb. My arms and face felt tingly, my head felt stuffy, my balance was off, some muscle pain, and fatigue. I went to the ER, and they found nothing wrong, but the attending physician wanted me seen by a neurologist. I had an MRI done (with and without contrast) and was sent to Stanford. Stanford found nothing wrong with me, and my MRI was clear. They basically said I was depressed/anxious/stressed.

I believed what they said since I was completing a master's program, and was under a lot of stress. I didn't have insurance at the time, so I just assumed that my body had an extreme reaction to stress and moved on. Over time (like a year), most of the symptoms disappeared. I still get dizziness and numbness and tingling when I am very overtired or hot.

July 2016 (eight years later), I was standing in front of my TV when I experienced true vertigo. I had to lie down for the rest of the night. The next morning, I was dizzy, my ear was plugged, and the numbness and tingling was back. I am waiting on a referral from my primary doctor, but I am a little freaked out.

Does this sound like lupus? I'm headed to the doctor tomorrow, and wondering if I should ask for tests.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7473
   Posted 8/17/2016 10:23 AM (GMT -6)   
I see that you posted back in 2008 about having vertigo - at the time you were wondering if it was a reaction to Plaquenil.

What did it turn out to be in 2008? Was it treated with anything? Are you still taking Plaquenil or other medications?

Going on just the info you presented above, my guess would be that you have an ear infection or other ear issue. That is generally the case when I have vertigo. (However, I also had 3 months of vertigo that was related to my Lupus.)

Unless other things are ruled out, I would certainly not go straight to Lupus. Remember, Lupus is diagnosed by having 4 of 11 symptoms - which I don't think you have. There is not a simple test for Lupus, it's a complicated disease.

Typically, four or more of the following criteria must be present to make a diagnosis of systemic lupus.

The “Eleven Criteria”

1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurologic disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

lrm22
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 8/17/2016 10:43 AM (GMT -6)   
Whoa, I didn't even realize I posted here before. In 2008, I has all the symptoms I posted. Since no one believed all this could be going on, I found a lyme doctor. We treated it as lyme, and I got better over a year and a half. I have not been on any medications since then.

This year it happened again, almost identical to 2008. Now I am wondering if it was lyme in the first place, or something else?

I am being tested for inner ear issues, but not sure anything ear related would explain the numbness and tingling in my face and limbs.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7473
   Posted 8/17/2016 10:59 AM (GMT -6)   
Sorry, somehow I managed to skip over when you said the numbness and tingling came back with the vertigo. Silly me!

Very odd.

I tend to try to let Drs do their work without influencing what they are looking for - by that I mean give them all your symptoms, anything out of the ordinary whether you think it's related or not -- some small thing may be a clue for them. Then towards the END of the appointment, say something like, "I was wondering if this could be ____", does that fit at all?" That way they can be thinking more broadly, instead of being focused on what we might think from the get-go... I just believe that's a better use of the Drs time and achieves a better result.

Sure hope you find a solution!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

lrm22
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 8/17/2016 11:26 AM (GMT -6)   
Good idea!
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