[medicalmystery7]

I've had a wide range of neurological symptoms for many years. They began around when I was 14 years old, and I am 24 years old now. I do understand that I'm a lot younger than most NHP patients, so maybe questioning whether I have it is a stretch; I don't know.

My symptoms include balance issues, nearly 24/7 headaches as well as a sensation like there's liquid moving around my brain, memory difficulties, trouble finding words, seizure-like episodes (e.g. smelling something burning or involuntarily biting down repeatedly before falling asleep), difficulty with focusing, diminished sense of taste, an increased sensation of pressure in my head at higher elevations, shaky hands, and poor coordination.

The one symptom I have that I never really thought could be related to my neuro symptoms is urinary urgency and incontinence. I'm CONSTANTLY having to run to the bathroom as often as 4 times in a single hour. Once I have to go, I have to GO or else I'll wet my pants. When I was in college, I would sometimes wear menstrual pads to my classes so that it wouldn't show if I started peeing in my pants, and I distinctly recall numerous instances where I couldn't get to a bathroom quickly enough and did embarassingly wet myself. That doesn't happen very often now that I'm done with college and work from home, so I'm able to run to the restroom the second I have to go. I still have to get up constantly to use the restroom, though. Doctors have ruled out the typical causes like diabetes and urinary tract infections (just in case I had one that lasted almost a decade? Hrm.)

So a little while ago, I was watching an episode of some show called Second Opinion: Mystery Diagnosis or something like that. The woman on the show wound up having NHP, and she had several of the same neuro symptoms I had in addition to the urinary incontinence. She was quite a bit older than me and also worse off in that she said she couldn't make herself walk at times...I'm not that bad, at least yet. But it's got me wondering whether this could be my answer.

The thing is, I have already had both an MRI and a CT scan and was told they were both normal. Well, my first neurologist said there was volume shrinkage on the CT scan, but then my second neurologist disagreed. There was also a small spot on my MRI, but it's so small and didn't change any when we did another scan in 6 months, so doctors don't think it's significant.

So is the fact that these tests came back normal enough to rule out NHP or a similar issue with my CSF? Or is a lumbar puncture required to rule out the possibility? If so, any suggestions on how to get my doctor to do one for me? I've been to three different neurologists, and they've all basically dismissed me as crazy. The last one I saw a few days ago was downright rude to me and kept rolling his eyes at me and telling me I needed to see a psychiatrist (which I have already done, but whatever!)

Any input would be greatly appreciated. Thank you!