Well, I guess I went about things wrong the first time I posted. I should have came here to introduce myself but the night I did post, I was so frustrated and disappointed I vented as soon as I found people I could share with . I'm not sure what diagnosis I am going to end up with, I just know something is going on and it has me scared. I have had various neurological problems since 2006, my last an episode of stroke like symptoms that they don't think was a stroke. I have also been what I termed "absentminded" the past two weeks but have realized may actually be what you all call "brain fog" - love that thread by the way! Over the past month, I have done so much reading on neuropsychiatric SLE and felt it could explain so many of the things I have been through. It is frustrating to see a Rheumatologist who will not even consider the possiblity even with a positive ANA of 1:640 (speckled and centromere). My neuro says I have inflammation of the brain area but he doesn't think it is MS; after reading about that as well, I agree with him. He really feels it is autoimmune. I cannot help but think that if all my symptoms are in the CNS, then maybe all the lab answers are there as well. Although the rheumatologist is the one who mentioned a possible second spinal tap the first time I met him, he completed dismissed me because the only blood test to come back positive was my ANA. He even admitted there were tests that could be performed that could possibly indicate lupus if I were to have a spinal tap but he just said I have limited scleroderma and if I did not want to be treated for that, I don't need to come back to him. It's like I went to the store to get the fixin's for pizza and walked out with tofu (no offense to those who like tofu ). I don't like tofu, wouldn't know what to do with it anyways. I realize limited scleroderma can have devastating symptoms but they are not bothering me right now. I can live with a few minor things, what I cannot accept is losing my mind. I have two little children.I am managing right now but I cannot let this keep going undiagnosed and untreated. I have to think of the quality of life I can offer them down the road and to do so, I have to know what I am fighting.
Thank you for providing this space to vent, talk, and laugh. I have done a lot of reading since I first posted and love the opportunity to learn from so many people who have similiar but different stories as I.