[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!

[jasontaub23]

Generally speaking, as I am not a doctor, I had a sunt place in 1970, I have learned that usually CT scan or MRI will show nothing abnormal, the two ways that I have been told to check for these types of abnormalities and I have had both are a spinal tap and also having an opthamologist look in your eyes to see if the ventricles in the backs of your eyes are swollen.

[medicalmystery7]

Originally Posted by jasontaub23

Generally speaking, as I am not a doctor, I had a sunt place in 1970, I have learned that usually CT scan or MRI will show nothing abnormal, the two ways that I have been told to check for these types of abnormalities and I have had both are a spinal tap and also having an opthamologist look in your eyes to see if the ventricles in the backs of your eyes are swollen.

Oh? Interesting. I researched the topic a little last night and kept coming across information saying enlarged ventricles would show on a CT/MRI. If it is the case that an MRI/CT doesn't usually show anything abnormal, then the trick would be to get my neurologist to take me seriously enough to do a spinal tap. I'm guessing he'd refuse since he already thinks I'm just a hypochondriac (I guess you can psyche yourself into peeing every 15 minutes with hypochondria; such BS.).

I'm not saying I have this issue. It's just the first condition I've come across that could account for both my cognitive issues and my urinary issues at once, and the fact that it involves CSF fluid is interesting to me too since I've always said it feels like there's liquid moving around in my brain. Not sure if CSF fluid is something you can actually feel, though.

[ennairb]

My enlarged ventrical showed up on my MRI. Now I'm waiting to find out if the "moderate" enlargement is of concern or causing my double vision and other strange symptoms.

[PTC_2013]

My symptoms aren't the same as yours, but I was having headaches. The only reason my issue was found and dealt with quickly is I immediately assumed vision issues (due to some double vision also) and went in. They saw the pressure and bleeding in my eyes because they see a HUGE picture of your eye . . . in fact, the neurologist said he may not have noticed looking at it smaller if he didn't know it was there to look for.

I only mention this (with different symptoms) because I have increased CSF, but my MRI was completely normal and that is common with pseudotumor cerebri. So, there is at least one issue that would show a normal MRI, but if you've had your eyes checked and there is no swelling or hemorrhage, then it's different. The swelling and bleeding in my eyes meant it was taken very seriously and I was pushed through and given appointments within 48 hours for all of my testing.

Originally Posted by medicalmystery7

Oh? Interesting. I researched the topic a little last night and kept coming across information saying enlarged ventricles would show on a CT/MRI. If it is the case that an MRI/CT doesn't usually show anything abnormal, then the trick would be to get my neurologist to take me seriously enough to do a spinal tap. I'm guessing he'd refuse since he already thinks I'm just a hypochondriac (I guess you can psyche yourself into peeing every 15 minutes with hypochondria; such BS.).

I'm not saying I have this issue. It's just the first condition I've come across that could account for both my cognitive issues and my urinary issues at once, and the fact that it involves CSF fluid is interesting to me too since I've always said it feels like there's liquid moving around in my brain. Not sure if CSF fluid is something you can actually feel, though.

[Katie79]

Originally Posted by PTC_2013

My symptoms aren't the same as yours, but I was having headaches. The only reason my issue was found and dealt with quickly is I immediately assumed vision issues (due to some double vision also) and went in. They saw the pressure and bleeding in my eyes because they see a HUGE picture of your eye . . . in fact, the neurologist said he may not have noticed looking at it smaller if he didn't know it was there to look for.

I only mention this (with different symptoms) because I have increased CSF, but my MRI was completely normal and that is common with pseudotumor cerebri. So, there is at least one issue that would show a normal MRI, but if you've had your eyes checked and there is no swelling or hemorrhage, then it's different. The swelling and bleeding in my eyes meant it was taken very seriously and I was pushed through and given appointments within 48 hours for all of my testing.

I have congenital hydrocephalus, also known as obstructive hydrocephalus, and I know next to nothing about NPH, but have you consulted a neurosurgeon? I have personally never seen a neurologist, and up until last last month, had not seen a neurosurgeon in about 15, but when I started experiencing strange symptoms, I went straight to a neurosurgeon and with an MRI, he was able to see my enlarged ventricles right away.