What to say to the Neurologist

Let be briefly sum up my issues so I can get to my question:

3 years ago I was diagnosed with a Spontaneous Spinal Leak, low Csf pressure and received a blood patch. I had an orthostatic headache, POTS symptoms, and a crazy head pressure feeling. The headache went away with the patch but the other things lingered...

1 1/2 years ago my primary care doctor became interested in researching Lyme and decided to investigate my lingering strange symptoms. At the time I had moving twitches, blood pooling in my feet, nerve pain, depression, anxiety, brain fog, extreme tiredness, choking, gagging, occasional headaches.

My test came back negative but he decided that my neurological problems were severe enough to diagnose me clinically.

I don't recall a tick bite, at the time I got sick, I was hiking deer trails and picking tick off of my pants, but I don't recall a bite.

For 8 months I took aggressive antibiotic treatments and many of my symptoms lessened. My anxiety was better, my twitching, my tiredness...it seemed to help.

My feet were still purple from the blood pooling. He said he felt it was nerve damage from the Lyme and that I would have to live with it. He eventually said that I had POST Lyme...meaning I had been treated but I still had symptoms and damage. He said come back in a year and we would recheck...well, then he moved out of state.

So, end of June I went camping, and had tons of mosquito bites-no big deal-they went away quickly but then I noticed that my feet weren't purple anymore.  AND the head pressure had returned and the orthostatic  headache. It is not as bad as it was last time...my left ear feels like it's visiting the ocean without me...it pops at random times, and the pressure makes me dizzy and my head foggy...If I drink caffeine, take decongestants, etc. I can function pretty well...the best thing is to lie down flat on my back, and it feels fine. I still have twitching throughout my body but I am used to that happening.

I went to the clinic where my doctor used to be, hoping that since they were the ones who had helped this whole time, they would be familiar with what was going on. BOY! Was I wrong. The PA I saw said that my old doctor diagnosed everyone and their dog with Lyme...he eventually said I had allergies and sent me home with a prescription for decongestants (which I like, so score, I guess). He recommended that I go back to the neurologist that diagnosed the Leak.

Finally, I am getting around to making an appointment with the neurologist...here is the problem, I think he is not going to believe I have Lyme because my test was negative...and he just might think I am out of my mind.  What do I tell him? How do I explain it to him? On the up side, if I don't have Lyme (the doctor who said I had it told me: If you don't have Lyme, I don't know what you have) maybe he can tell me why I have these weird symptoms?! Like why are my feet not purple when there is the pressure in my head? Why do my ears feel plugged when I am standing or sitting but not when I am down?

I apologize for the length but I had to say it. So what do I say to the Neuro?