NPH - Misdiagnosed Dementia

NPH patient physical therapy session
NPH patient physical therapy session | Source

Three most common symptoms - not everyone has all 3 symptoms. Defined by awordlover

Written 4/1/2013 by Anne DiGeorge

These three most common symptoms of NPH -Normal Pressure Hydrocephalus are usually missed by most doctors. Unless a patient, or the patient's advocate, does their homework and asks the physician to consider NPH, the diagnosis the patient receives can determine the way he lives out his life. That will usually be either with a full time in-home caregiver or in a nursing home.

  1. Incontinence
  2. Gait Impairment (walking problems)
  3. Dementia

Not all patients with NPH will have all three of those symptoms, but those are the top three that tip off doctors. A patient with NPH could have just one of those three and a few of the other symptoms listed below.

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

Misdiagnosed Conditions (continued).Researched by awordlover

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

Misdiagnosed Conditions - Researched by awordlover

Those three symptoms could be any one of these conditions. The lists are not a complete list of that one disease. I have listed only those symptoms that are similar.

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

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

Do not copy this article. It is not free for the taking just because it is on the internet.

This means don't copy this article. It also means if you DO copy, I am going to file a DMCA notice of copyright infringement against you. You have been warned.
This means don't copy this article. It also means if you DO copy, I am going to file a DMCA notice of copyright infringement against you. You have been warned. | Source

Wrong Diagnosis - Researched by awordlover

Isn't that list amazing? How can so many diseases be so similar to one another? An even better question, how can doctors make any kind of 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 one of those listed conditions as a final diagnosis that can mean the end of life as they know it. Many people have been treated for one of them, sometimes for as long as 15 years, before some inquisitive and "listening" doctor comes along and says, "I wonder if..."


NPH

Graphic showing normal pressure hydrocephalus
Graphic showing normal pressure hydrocephalus | Source

This surgery will not help everyone. It is only a suggestion for your consideration.

It is possible that a surgery can help
It is possible that a surgery can help | Source

What is NPH?

So what is the medical definition of NPH?

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

It usually strikes people over age 55 and, if caught early enough, a surgery can be performed that will eliminate most of the symptoms. While it IS brain surgery and many patients are afraid of that, this procedure has been performed thousands of times with great success. It can make all the difference in your quality of life.

Very good video explaining NPH - From Beginning Symptoms to Treatment. Suggested by awordlover

72 year old diagnosed with Alzheimer's Disease

Article Suggestion by awordlover

Jim Lambert was a 72 year old retired hospital fundraiser. One night he got up to go to the bathroom and felt on the floor. His symptoms quickly kicked in: inability to walk a straight line, bladder and bowel incontinence, and a shuffling walk. He was diagnosed with Alzheimer's Disease, but his wife couldn't continue taking care of him because of her own health problems. He was admitted to a nursing home, spent his days slumped in a wheelchair and could not stand on his own. His wife didn't believe he had Alzheimer's and started investigating. Three years later he had a diagnosis of NPH. You can read his story here.

Symptoms for NPH - Normal Pressure Hydrocephalus

List of symptoms for NPH - Researched by awordlover

  • 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)

Again, 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 for NPH

  • CT scan
  • MRI
  • Lumbar puncture
  • Radionuclide imaging studies


Diagnosis

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

Treatment for NPH - Researched by awordlover

A neurosurgeon implants a permanent shunt (a small tube) that drains out 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. The 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.

Treatment Plan - Surgery - suggested by awordlover

Dick Wagner, songwriter for Alice Cooper's Band

Article suggested by awordlover

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.

Often found In 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 most doctors rarely order an MRI or CT scan of the brain and patients are in no condition to ask for them. Doctors 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, 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 greatly cut the numbers of people misdiagnosed every year.

Looks like Alzheimer's, but it's Frontotemporal Dementia

Article suggested by awordlover

Although this case is not NPH, 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.

Second Opinion - Advice by awordlover

To anyone who has received a diagnosis of dementia, Alzheimer's Disease or any of the diseases or disorders I have listed above:

  • Please go get a second opinion.
  • Go 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 the evaluation and 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 that a doctor may be wrong. Even if it turns out he was right, at least you have ruled out all other possibilities.

Copying is stealing

Do not copy this article.
Do not copy this article.

Written 4/1/2013 by Anne DiGeorge

Updated 1/14/2014 with links and videos by Rachael O'Halloran

Updated 2/2//2014 by Rachael O'Halloran to replace pixelated copscape logos and correct format issues.

© 2014 awordlover

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24 comments

Made profile image

Made 2 years ago from Finland

Very important hub! I've never heard of NPH before. I wonder how many misdiagnosed people there can be? In my work, I take care of some people with Alzheimer's disease. It's more common that younger people are diagnoesed with frontotemporal dementia. I'll probably come back to this article. Very interesting!


Dolores Monet profile image

Dolores Monet 2 years ago from East Coast, United States

I recently heard about NPH on the radio. It's sad how often doctors make assumptions due to age. While I am no fan of putting a patient through every test that there is, sometimes, as you point out here, it can make all the difference in the world. (voted up and shared)


IzzyM profile image

IzzyM 2 years ago from UK

Interesting hub! I had never heard of NPH. My mother has vascular dementia and I wish she had NPH instead (because it is treatable). She does not have a problem with walking so I guess that rules her out. Pity.


Marcy Goodfleisch profile image

Marcy Goodfleisch 2 years ago from Planet Earth

Excellent and well-researched article - everyone with family members approaching various ages (which is all of us, most likely) should read this. I learned so much, and your hub clarified some misconceptions I had. Great job!

Up and shared!


ologsinquito profile image

ologsinquito 2 years ago from USA

It is important to rule out all other causes before pronouncing that someone has Alzheimer's. Many of these conditions can probably be treated. Caregivers should also probably do an Internet search for naturopathic treatments, just to see what comes up, as some people have managed to arrest the dementia in its earliest stages.


awordlover profile image

awordlover 2 years ago Author

Thank you, Made, for commenting and following.


awordlover profile image

awordlover 2 years ago Author

Thank you Dolores Monet. If this alternative diagnosis of NPH can be considered before labeling someone with a disease, it is likely some people would have a different diagnosis than the one that was originally in their chart.


awordlover profile image

awordlover 2 years ago Author

IzzyM, vascular dementia is one of the misdiagnosed diseases featured in this hub. As it says in this hub, a patient does not need to have all of the listed symptoms to have NPH. A positive diagnosis is made by observing symptoms and using imaging studies and lumbar puncture. Your mother not having a walking problem should not make doctors stop looking to see if she might have NPH instead of vascular dementia or other neurological cause. It can't hurt to have NPH ruled out. An MRI and lumbar puncture will likely give a definitive answer. Usually a patient who has a lumbar puncture, as soon as fluid is removed, the patient sees immediate results in their symptoms. Doctors will consider it especially if the patient (or the patient's advocate or family member) insists on having MRI (or CT) and lumbar puncture (or updated studies, if it has been more than two years). It can make the difference between knowing and getting treatment or staying the present course. Thank you for commenting.


awordlover profile image

awordlover 2 years ago Author

Marcy Goodfleisch, thank you very much.


awordlover profile image

awordlover 2 years ago Author

ologsinquito, your statement is very true. Thank you for your comment.


ChitrangadaSharan profile image

ChitrangadaSharan 2 years ago from New Delhi, India

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!


awordlover profile image

awordlover 2 years ago Author

Thank you ChitrangadaSharan


IzzyM profile image

IzzyM 2 years ago from UK

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 profile image

awordlover 2 years ago Author

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 profile image

IzzyM 2 years ago from UK

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 profile image

awordlover 2 years ago Author

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.


therunningman profile image

therunningman 2 years ago from Rhode Island

Very interesting/enlightening hub. Thank you.


awordlover profile image

awordlover 2 years ago Author

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


tirelesstraveler profile image

tirelesstraveler 2 years ago from California

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:)


RTalloni profile image

RTalloni 2 years ago from the short journey

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


awordlover profile image

awordlover 2 years ago Author

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.


awordlover profile image

awordlover 2 years ago Author

RTalloni - thank you for reading and for your comment.


DDE profile image

DDE 2 years ago from Dubrovnik, Croatia

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


awordlover profile image

awordlover 2 years ago Author

Hi DDE,

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

Rachael.

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