Possible NPH

by Emily
(San Francisco)

Throughout my life I have been screened for Parkinson’s, MS, and narcolepsy with no clear results. I have periodic vertigo that makes me fall, weakness and muscle aches, bladder issues, and digestion and allergy issues.

My memory is like a blanket has been put over it. I can’t remember past a few minutes unless I write it down. If someone jogs my memory that can bring it back but it’s otherwise like it didn’t happen.


I’ll remember complex things from college but not people’s names who I’ve known for years.

I have been through a number of things that may have caused this. When I was three I had recurring ear infections and pneumonia. I’ve had 9 concussions, while mostly minor they had an effect for weeks to months. For a long time I was sickly and we found that I wasn’t eating enough because I would forget.

I am in my thirties and adapted by setting phone alarms. We currently think I have Hypermobile Ehlers-Danlos syndrome (hEDS), because my joints sometimes sublux (almost dislocate) and the other issues sometimes overlap.

I have been told I don’t have chiari but feel like there are so many brain related issues something more is happening.

In the past few years I have had pain in my neck on the right, ear and eye pain, and shoulder pain on the right. Whenever my pulse goes up or I lay on my stomach this gets worse. I have been on rounds of NSAIDs and they slightly reduce that.

I recently went on a month of Cipro antibiotics and it drastically reduced my ear and eye pain but has not done anything for the rest of the symptoms except my memory is slightly better and I can talk more clearly.

I have been worried I’m losing my mind in addition to my body and recently read about Normal Pressure Hydrocephalus (NPH). I have to wonder if I could have this from whatever causes the pain in my neck or a prior inner ear inflammation.

I have had MRIs but not to screen for it. There are not many things that cover all my issues at my age so that may be the next one on my list. I’m hoping there may be other ways to screen for them, outside of MS and Parkinson’s not much else explains what’s been happening to me since I was a kid.

Doug's Reply. Emily, thanks for submitting your story. A screening for NPH might not be a bad idea, especially since NPH can sometimes be misdiagnosed as other conditions.

As I mention in my article, Misdiagnosed as Alzheimer's, Normal Pressure Hydrocephalus Is Treatable, the three cardinal symptoms of NPH are 1) bladder problems; 2) balance problems; and 3) memory problems. And you do mention sometimes experiencing all three.

Best of luck to you. I hope you are able to resolve this soon!

Kind regards,
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