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@danawyn

Sorry for all you guys are going through. Ask if an EMG test might give insight into what is going on. I have CIDP and the EMG confirmed it after MS was ruled out via MRI. Talk to a neurologist (your rheumotalogist can suggest someone and they should work together on this). My rheumatologist was the one that steered me to neuro for a correct diagnosis and treatment. Good luck.

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Replies to "Sorry for all you guys are going through. Ask if an EMG test might give insight..."

Thank you for the advice. We have seen a neurologist, but he never mentioned an EMG. He referred us back to her rheumatologist, saying there is nothing he can "see" (from MRIs and bone scan) musculoskeletaly. Truly something we will bring up to the rheumy on our next visit. God bless you for taking the time to respond to our dilemma.

I think seeking out a good Rheumatologist and Neurologist is a step in the right direction.
My Rheumatologist recommend I see a Neurologist when I was having trouble with my feet going numb. Good thing she did! I was diagnosed with PN this past month.
Pat