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CNS Lupus?
Jan 30, 2014
Hi there,

I'm looking for some insight / advice. I apologize in advance - this will be a little long.

I've been sick since July with a mulititude of symptoms:
[*]fever (99 - 100)
[*]shortness of breath
[*]heart palpitations
[*]loss of balance / dizziness
[*]extreme fatigue
[*]memory issues
[*]inability to concentrate
[*]muscle fatigue (ex. arms get very tired and achy when blow drying my hair)
[*]tingling in lower legs
[*]involuntary muscle jerking
[*]involuntary muscle "pulsing"
[*]brain "fogginess" when trying to do math (like splitting a check at a restaurant, which used to be easy for me)
[*]heat intolerance
[*]easily overwhelmed and anxious in crowds / loud situations

I've seen a ton of doctors and have basically tested negative for everything except:
[*]elevated ESR
[*]elevated CRP
[*]elevated aldosterone
[*]elevated homocysteine
[*]elevated BUN
[*]elevated creatinine
[*]low eGFR non-african descent
[*]elevated neutrophils
[*]decreased lymphocytes
[*]elevated ACA IgM Antibodies from ANTI PHOSPHOLIPID AB PANEL
[*]positive ANA 1:160

My list of negative tests include:
[*]vitamin / mineral deficiences
[*]fungal infections
[*]bacterial infections
[*]parasite infections
[*] pulmonary embolism
[*]thyroid issues
[*]West Nile
[*]Valley fever
[*]heavy metal toxicity

There have been other tests, but these are the majority of them that were negative.

Most of my symptoms lasted 4 months, but have since mostly resolved. I have "episodes" where some of the symptoms return for a day or more, particularly the fever, heart palpitations and shortness of breath and crowd and noise intolerance, but they're not constant like they were.

The only symptoms that I continue to have daily are:
[*]loss of balance / dizziness
[*]muscle fatigue
[*]tingling in lower legs
[*]involuntary musle jerking
[*]involuntary musle "pulsing"
[*]brain fog when doing math
[*]heat intolerance

I've recently seen an MS specialist at Stanford, who told me that it's not MS, because the lesions are generally not the size nor in the location of MS lesions. But she wants me to have another MRI in March.

She was the one who tested my ANA and said that she doesn't feel I need to see a rheumatologist at this point because I have no systemic symptoms.

But a rheumatologist researcher (not MD) at Stanford thought it would be beneficial to see a rheumatologist as my symptoms sounded like they could possibly be related to CNS lupus.

I'm not sure what to do at this point, do I trust my neurologist or seek out a rheumatologist on my own?

Many thanks for getting this far, and for any advice / insight you have!

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