now I just don’t know

Hello, family

Problematic trip to Neurologist today. After a short exam, he got concerned. He says to me, your reflexes are better, but not you. So we did a nerve conduction. Within normal limits, he says. So we did MRI’s of my brain, neck, and spine. No white matter lesions on the MRI of the brain. So we did a spinal tap. Coincidentally, my head is killing me right now. Before letting me go, he says that now he is unsure of my CIDP diagnosis. He is forwarding my whole workup to a colleague at Yale Medical Center. With my peripheral nerves functioning within normal boundaries, he says that the problem is progressing and what worries him is the progression and that he and his colleague believe that my problem is in the brain or spinal cord.

So now I am confused. I may not even have the diagnosis that allowed me to find this forum and make some friends, including one very special one. That hurts. I feel separated from you all a bit now, a bit distanced from you all. Worst of all, now there is uncertainty again. With no name for my problems, what the hell is wrong with me. Additionally, there is the concern that my brain is the issue.

I am angry and swimming in confusion right now. The headache I am beginning to think is the tip of the iceberg for the infamous “pray for death” spinal headache. Thanks for the concern everyone. Pray for me, please. I need it. Thank you.