AngelM
Senior Member
- Messages
- 150
- Location
- Oklahoma City
Does anyone have experience or knowledge of Normal Pressure Hydrocephalus? I was diagnosed with it nearly thirty years ago, but was given the impression that it wasn’t a big deal—one of those “functional” disorders. I had experienced some serious head trauma as a child and the doctor told me the NPH was more than likely a result of those injuries. Since I was asymptomatic, I dismissed it.
However, in addition to my CFS, I have more recently begun dealing with progressively worsening neuromuscular symptoms—difficulty with balance and walking. I have seen two neurologists—multiple tests and scans were done, and no abnormalities were found. As I began ruling out other conditions, I was forced to come back to the original NPH diagnosis. For the first time, I began to research the disorder and realized my symptoms were entirely consistent with early stages of NPH. I learned that the disorder is rare, not easily diagnosable, and can be reversed by shunting—if caught early enough. End stages include dementia, incontinence, and lack of mobility. But in early stages, headache, muscle weakness and gait disturbance are the prominent symptoms.
I contacted my neurologist (we had discussed NPH findings on my MRI), and asked if he could order diagnostic tests specific to NPH. His response was that the only true test for NPH was lumbar puncture, and he did not believe from observing my gait that my neuromuscular symptoms were serious enough to warrant an LP. He also told me that NPH was NOT caused by head trauma, though information from the Hydrocephalus Foundation contradicts that—stating that, though the cause of NPH is unknown, it is believed to be the result of a number of health issues, one of which is severe head trauma. The foundation also recommends that, for the best outcome, shunting should be done sooner rather than later. The fact that tests have ruled out other conditions combined with my NPH being diagnosed nearly thirty years ago tells me that my NPH-like symptoms warrant being more thoroughly investigated.
I am back again at CFS square one. One of the symptoms of NPH is chronic fatigue, so I definitely think it is worth ruling out as a contributing factor. I don’t like the idea of waiting for my symptoms to worsen. I’ve waited long enough.
From reading the stories of others with NPH. it seems that, like CFS victims, the road to getting a proper diagnosis and treatment is a long one that includes multiple doctors and neurologists. I am so worn out and frustrated at being told my symptoms are either imagined or “not serious enough” while at the same time my quality of life continues to decline. How bad do symptoms have to become before somebody will listen?
However, in addition to my CFS, I have more recently begun dealing with progressively worsening neuromuscular symptoms—difficulty with balance and walking. I have seen two neurologists—multiple tests and scans were done, and no abnormalities were found. As I began ruling out other conditions, I was forced to come back to the original NPH diagnosis. For the first time, I began to research the disorder and realized my symptoms were entirely consistent with early stages of NPH. I learned that the disorder is rare, not easily diagnosable, and can be reversed by shunting—if caught early enough. End stages include dementia, incontinence, and lack of mobility. But in early stages, headache, muscle weakness and gait disturbance are the prominent symptoms.
I contacted my neurologist (we had discussed NPH findings on my MRI), and asked if he could order diagnostic tests specific to NPH. His response was that the only true test for NPH was lumbar puncture, and he did not believe from observing my gait that my neuromuscular symptoms were serious enough to warrant an LP. He also told me that NPH was NOT caused by head trauma, though information from the Hydrocephalus Foundation contradicts that—stating that, though the cause of NPH is unknown, it is believed to be the result of a number of health issues, one of which is severe head trauma. The foundation also recommends that, for the best outcome, shunting should be done sooner rather than later. The fact that tests have ruled out other conditions combined with my NPH being diagnosed nearly thirty years ago tells me that my NPH-like symptoms warrant being more thoroughly investigated.
I am back again at CFS square one. One of the symptoms of NPH is chronic fatigue, so I definitely think it is worth ruling out as a contributing factor. I don’t like the idea of waiting for my symptoms to worsen. I’ve waited long enough.
From reading the stories of others with NPH. it seems that, like CFS victims, the road to getting a proper diagnosis and treatment is a long one that includes multiple doctors and neurologists. I am so worn out and frustrated at being told my symptoms are either imagined or “not serious enough” while at the same time my quality of life continues to decline. How bad do symptoms have to become before somebody will listen?
