NPH - Misdiagnosed Dementia

Author:
awordlover
Updated:
May 31, 2024

NPH patient physical therapy session
Image from brighamandwomens.org

Medical Definition for NPH

NPH is essentially water on the brain, caused by a build up of spinal fluid that puts pressure on the nerves of the legs, bladder and cognition functions. The symptoms are similar to Alzheimer's Disease, dementia and any number of neurological brain disorders.

The one difference with NPH is that many times the symptoms can be reversed.

NPH usually strikes people over age 55 and, if caught early enough, a surgery can be performed that will eliminate most of the symptoms. Many patients are afraid to do it because it IS brain surgery, but we have come a long way in the last twenty years. Since 2010, the procedure has been performed thousands of times with great success. It can make all the difference in your quality of life.

Three most common symptoms

The most common symptoms of NPH (Normal Pressure Hydrocephalus) are:

Incontinence
Gait Impairment (walking problems)
Dementia

These symptoms are common in other diseases which shows how easily doctors can miss it, causing NPH to be misdiagnosed. A patient with NPH could have just one of the symptoms, while others have many of the other symptoms on the list below.

Misdiagnosis is not as prevalent nowadays but it does happen. Patients are better educated about their health before they ever step foot in a doctor's office. They network with others who have the same diagnosis to learn strategies ti adjust their lifestyle.

Don't be afraid to ask the doctor to consider NPH. When this diagnosis is correct, the best decisions can be made for the patient, whether he must have a full time in-home caregiver or if he should be an inpatient in a nursing home.

Take a look at the 15 diseases/conditions I listed in the next two columns. While you are reading, look for common denominators to see how similar they are to the above three symptoms.

Misdiagnosed Conditions

1. Parkinson's Disease

balance difficulty,
shortened stride length
difficulty turning
shakiness
tremor

2. Alzheimer's Disease

memory loss
depression
loss of concentration
more than usual forgetfulness

3. T.I.A. (transient ischemic attack)

numbness or weakness in the face, arm, or leg, especially on one side of the body
confusion
difficulty in talking or understanding speech
trouble seeing in one or both eyes
difficulty with walking
dizziness
loss of balance and coordination

4. Psychosis

Hallucinations
Delusions
Paranoia
Mania
Depression
Emotional changes
Personality changes
Behavior changes
Lack of awareness of mental changes

5. Stroke

Temporary limb weakness
Limb tingling
Confusion
Trouble speaking
Trouble understanding speech
Dim vision
Loss of vision
Trouble walking
Dizziness
Loss of balance
Falls
Loss of coordination

Scroll to Continue

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6. Delirium

Confusion
Disorientation
Hallucinations
Incoherent speech
Restlessness
Anxiety
Delusions
Agitation

7. Depression

a loss in interest in activities once enjoyed
chronic fatigue
trouble focusing
difficulties with memory or in making decisions.
sleep abnormalities or disturbances
anxiety

8. Creutzfeldt-Jakob Disease

dementia
behavioral changes
failing vision
problems with thinking and judgement
memory problems
unsteady gait
speaking difficulty

9. Vascular dementia - usually the result of TIA or stroke

problems with memory
slowed thinking and learning
confusion
incontinence
shuffling walk
balance and falling issues
depression
language and speech problems
difficulty with organizational skills
mood and personality changes
wandering, getting lost

10. Diabetes

excessive thirst
excessive urination
fatigue
weakness
weight loss
blurred vision

11. Pick's Disease

social withdrawal
poor judgement
restlessness
mood swings
decline in ability to function effectively in activities of daily living

12. Huntington's Disease

short-term memory loss
problems with organization
concentration problems

13. Prion Diseases

Personality changes
Depression
Lack of coordination
Unsteady gait
Insomnia
Confusion
Memory problems
Inability to speak

14. ADHD - Attention Deficit Hyperactive Disorder

Not paying attention
Lack of attention
Impatience
Poor attention span
Easily distracted
Failure to listen to instructions properly
Getting bored very easily
Difficulty coping with details
Careless mistakes in work
Forgetfulness

15. Wernicke-Korsakoff Syndrome

Reduced eye movement
Staggering gait
Agitation
Confusion
Drowsiness

Wrong Diagnosis

Isn't that list amazing? How can so many diseases be so similar to one another? An even better question might be, with so many commonalities, how can doctors make a definite diagnosis without getting it wrong?

Therein lies the rub.

They do get it wrong, at least 40% of the time, according to the American Medical Association.

Every year, patients are given a dementia-type diagnosis, one that can mean the end of life as they know it. They were put on a treatment plan, some for as long as 15 years, then one day an inquisitive and "listening" doctor comes along, taps his chin and wonders: "I wonder if..."

A new round of testing and fresh eyes often changes the lives of these patients.

NPH

Graphic showing normal pressure hydrocephalus
Image from Gardenrain on Wordpress

Surgical Treatment for NPH

It is possible that surgery can help
Image from louisville.edu

Video explaining NPH - From Beginning Symptoms to Treatment.

72 year old man diagnosed with Alzheimer's Disease

Jim Lambert was a 72 year old retired hospital fundraiser. One night he got up to go to the bathroom and fell on the floor. His symptoms quickly kicked in: inability to walk in a straight line, bladder and bowel incontinence, and a shuffling walk.

He was diagnosed with Alzheimer's Disease. When his wife couldn't continue taking care of him because of her own health problems, he was admitted to a nursing home. When he arrived, he could not stand on his own so he spent his days slumped in a wheelchair. His wife didn't believe he had Alzheimer's and never stopped investigating. Three years later he had a diagnosis of NPH. You can read his story here.

Symptoms for NPH - Normal Pressure Hydrocephalus

Unsteadiness on standing
Difficulty in get started with the walking motion
Inappropriate repetition of movements
Flat expression on face, no mood
Urinary incontinence
Dementia
Loss of bladder control
Shuffling feet
Headaches
Forgetfulness, short term memory loss
Falls, without losing consciousness (also called drop attacks)

You do not have to have all of the above symptoms for it to be NPH. The primary symptoms physicians should be looking for are: incontinence, some degree of memory problems or dementia, and changes in walking functions.

Tests and Diagnosis

Neurological exam
Physical therapy evaluation
CT scan
MRI followed by lumbar puncture (spinal tap)

Surgical Treatment for NPH

A neurosurgeon implants a permanent shunt (a small tube) that drains a small amount of spinal fluid every day to prevent build up inside the brain.
Then a a tube is threaded under the skin, down to another part of the body, usually the belly, a valve is opened to release the fluid when the pressure builds up.
Fluid drains out of the brain and is absorbed by the bloodstream.

Results are seen immediately after surgery. Patients with the least amount or severity of symptoms see the most relief. Some patients might need a cane for support, but the mental deficits are remarkably improved.

Without treatment, the patient gets progressively worse until he cannot walk or do simple tasks. Falls become more frequent, and the patient becomes totally dependent on someone for care. Life span is markedly shortened.

If you notice a change in mental status of your loved one, seek immediate medical attention and keep NPH in mind when being evaluated for a diagnosis.

Video of Surgical Treatment for NHP

Dick Wagner, songwriter for Alice Cooper's Band

Dick Wagner, age 70, went through five years of dementia-like symptoms before he received his diagnosis of NPH. Now he's back writing and performing with the band. You can read his story here.

NPH and aging adults

It is believed that one in 20 people who have been diagnosed with Alzheimer's Disease or dementia actually have NPH, Normal Pressure Hydrocephalus.

But they won't get that diagnosis because some cost-conscious doctors selectively order an MRI or CT scan of the brain. Not all will welcome suggestions from patients. Doctors routinely address the symptoms they can see, not what is really going on inside the brain.

Not all dementia leads to Alzheimer's Disease. However, once a patient receives a diagnosis of Alzheimer's Disease, he/she will rarely look any further for another reason for their symptoms. They accept the diagnosis and medication for treatment, while watching their quality of life change forever.

And that's not right. If more patients questioned their "bad news" and put their doctors on the spot, it could reduce the numbers of people misdiagnosed every year.

Frontotemporal Dementia looks like Alzheimer's Disease

In this next case, I wanted to show you how strikingly similar other dementia diseases are. This story interested me because of the age of the patient.

Kenny Sparks, age 49, began stumbling over his words, became agitated, stressed, and depressed. He was given medication for depression, but it didn't help the other symptoms. He was diagnosed with Alzheimer's Disease. The doctor told his family if they wanted to do any traveling, to get it done in the next few years before he became incapacitated from the disease. He was diagnosed with Frontotemporal Dementia and you can read about his story here.

Getting a Second Opinion

My advice to anyone who has received a diagnosis of dementia, Alzheimer's Disease or any of the diseases or disorders listed above:

Get a second opinion.
Get a 3rd or 4th opinion, if you don't like what you are hearing.
Do not accept a final diagnosis without a CT scan or an MRI followed by a lumbar puncture (spinal tap)

I would much rather see a patient go through testing using lumbar puncture with imaging studies and be sure of a diagnosis, than to accept a diagnosis based on evaluating symptoms without the benefits of those tests.

It's your life. It's your health. Take the gamble on a second opinion because doctors can be wrong.

Even if it turns out the original diagnosis was correct, at least you have ruled out the other possibilities.

Thanks for reading.

Comments

awordlover (author) on March 07, 2014:

Hi DDE,

I just saw your comment today, so I apologize for not acknowledging it sooner. Thank you for reading and commenting.

Rachael.

Devika Primić from Dubrovnik, Croatia on March 04, 2014:

An interesting and hub with many facts you shared an informative and useful hub

awordlover (author) on March 03, 2014:

RTalloni - thank you for reading and for your comment.

awordlover (author) on March 03, 2014:

tirelesstraveler - that is so true. Doctors will be "practicing" until the day they die because it is not an exact science where one can say they have it down pat.

I'm glad your mother's patient got the medications straightened out. It is unfortunate but many patients doctor hop and get medications from each one.

One doctor doesn't know what another has ordered because the patient doesn't share that with them. They end up doing more harm than good to themselves in their quest to find a solution to their medical problems and in the process, end up on drugs with contraindications - drugs that work against each other.

Thank you for your comment and I'm glad to follow you also.

Rachael.

RTalloni on March 03, 2014:

So glad to see this posted with so much valuable info being made available to patients and their families!

Judy Specht from California on March 03, 2014:

Found this fascinating. My mother, a nurse had a patient who was diagnosed with dementia. One day a new doctor read the patients file.

He found she was taking drugs that interacted with each other. All had been prescribed by different doctors. He took all the most essential away and she suddenly was in her right mind.

Dr. are not God otherwise why would they be practicing:)

awordlover (author) on February 06, 2014:

Thank you for your comment, therunningman and thank you for clicking "follow"

therunningman from Rhode Island on February 06, 2014:

Very interesting/enlightening hub. Thank you.

awordlover (author) on January 16, 2014:

A spinal tap is not nice, but if it is done correctly with a sedative so the patient doesn't have anxiety or jerky movements, it can go smoothly. I've had 3 LP's and while I don't like them, each time it was necessary and each time it gave valuable info to my doctors. Vascular dementia has no cure, but does have a good prevention rate. Alzheimer's dementia does not. The latest research says early onset AD is hereditary and patients who have two or more family members with it should look into if they have the genes APP, PSEN-1 and PSEN-2.

http://www.alzheimers.org.uk/site/scripts/document...

Since you know it is "runs" in your family, be aware of changes in yourself, get others around you to be alert for symptoms and signs. The gene thing is rare according to the website link I just gave you, but get the testing. Write NPH down in a notebook so you (or someone close) can remember to have your doctors look at it if it ever becomes time. If NPH is ruled out, I hope your mother's medications can be reevaluated so she has more moments of lucidity. Good luck to you both.

IzzyM from UK on January 16, 2014:

Don't feel bad. Honestly! Your hub has been ever so helpful to me. I was also a nurse, many years ago, and my Dad was a GP. Long-retired, and just tired. Mum is 81 but looks much younger thanks to baby skin and a general lack of loss of hair color pigmentation, a gene she did not pass on to me. She calls me 'Granny' and when I asked her to tell me my age earlier, she replied '81'. That's her age, not mine. I am her daughter but she knows me and she doesn't, both at the same time.

Please don't feel bad about me or my situation. I discussed with mother just half an hour ago (at 3,20am my time, because she was up yet again) how she would feel about getting another MRI done. She's all for it. She had localized cancer before but that's all wrapped up now.

A spinal tap is not nice. I discussed that with her too. I like when she has those almost lucid moments.

She agrees that we should get NPH ruled out, or in, as the case may be.

Her brother, mother, granny and aunt all died from the same disease.

Why does n0-one from the WHO suggest that dementia is genetic? I'm next. I want it sorted!

awordlover (author) on January 16, 2014:

IzzyM - I feel very bad about your situation. I did not mean to upset you so much.

The hub message was to have a medical provider "rule out" or consider an alternative to be sure of the original diagnosis. I published Anne's hub, updated it with the latest information and in my comment I told you what I know from researching to update it and from a very very few patients I have met who have NPH. I am not a doctor, I am a Home Health RN part time. My background in medicine is not as extensive as Anne's was. I see cases of NPH less than 2 times a year as a visiting nurse. A practicing neurologist sees 10x that number in a year. Many doctors know about NPH, they just don't think about it to consider it. I really do hope you don't experience a letdown, and that if she does have NPH that the treatment will work for her.

But you have to keep in mind that the longer NPH goes undiagnosed, the less likely of a good response to treatment. Early diagnosis followed by swift treatment has the best results. I did not mean to give you false hope. It was just to have her doctors make sure your mother was not among the many who are misdiagnosed with other dementia diseases when it could be NPH or some other mimic In some cases, a doctor will not give consideration to another disease because they are too intent on looking for a more obvious cause.

If it turns out she does not have NPH, please ask that her present medications be evaluated. It should be done every 12 to 18 months especially if you see worsening symptoms which may signal the medications are not working at the present dose. A patient can become immune to a dose after so long. Besides exercise, daily mental stimulation, blood thinners, cholesterol medication, an SSRI like Prozac or SSNRI like Cymbalta for depression, that she is probably already taking, a drug called Trental which is meant for improving blood flow to the brain, also improves dementia symptoms. Many patients see results within the first six months with 400mg extended release tablets at 3 times a day. If she is not already taking a medication to help with her dementia symptoms, it is worth asking to give Trental a 6 month trial.

I apologize for upsetting you. Like all Anne’s health hubs, they are only meant to bring awareness and give information to the reader to be an advocate, either for themselves or a loved one. No matter if patients read hubs or read medical journals, they still learn some knowledge to question their doctors to consider an alternative that they have read about. The patient may not have that disease, but at least it puts the question to rest in their minds. Here are 4 links for you to look over. 2 for Trental and 2 for a drug called Namenda that has been used for dementia for years, but from what I have read it doesn't seem to be of much benefit like Trental.

2 links for Trental

http://www.drugs.com/cdi/pentoxifylline.html (Trental - improves blood flow to brain)

http://en.wikipedia.org/wiki/Trental

2 links for Memantine (Namenda)

http://www.drugs.com/cdi/memantine.html (not as much success with this drug in the USA. Seems to cause more confusion.)

http://en.wikipedia.org/wiki/Memantine

I will keep you and your mother in my thoughts and prayers IzzyM

IzzyM from UK on January 16, 2014:

In a way I wish I had never read your hub, because it would not have given me the hope I vaguely feel now!

I am going to see the doctor and get the condition ruled out, even though it means a 300 mile round trip for an MRI and a lumbar puncture. I've since read that 5% of all dementia sufferers actually have NPH instead. That's 5 in every 100, or 1 in 20 which is pretty high when you think about it. There are more than 20 patients attend the day-care my mother goes to once a week, so theoretically one could be curable. I've just lost my dad. I hate the fact that I am losing mum too. It's worth a try.

awordlover (author) on January 16, 2014:

Thank you ChitrangadaSharan

Chitrangada Sharan from New Delhi, India on January 16, 2014:

This is truly a very informative and well researched hub!

Thanks for clarifying so many important points about these medical conditions. It will be very helpful to many.

Thanks for sharing. Voted up!