Thanks so much for all your replies! I'll bet there are a lot of people out there with no answers at all. So this is good to have some. I had been wondering for so long why I was in bed so much and just wiped out. But could not get much from my Rheumatologist--he just said the SLE is not back. So it must be Fibro. It took the addition of symptoms like numbness, weakness and headaches to finally ring some bells to send me on to the Neuro doc---and that was my idea!! My Rheumie said afterward he thought there would be nothing wrong showing up on the results. What a guy!!
The Brain Scan showed white spots and then I went for a Spinal Tap. That shows areas of 'demyelination similar to MS'
And I will have another test--an EMG at the end of the week. The Neurologist will do that test and I can ask him all the questions about this illness and how it can be treated.
This is a different road than I thought I would have!!