In this writing business, one column can lead to another. Last month I wrote about Parkinson's disease, a condition with no definitive diagnostic test but some rather striking symptoms.
Yet some of those symptoms may be caused by another illness, St. Albans resident Kandi Taylor told me in an e-mail after the column was published.
Specifically she referred to normal pressure hydrocephalus, a neurological condition resulting from too much fluid pressing on the brain. The condition affects the elderly and if not properly treated, worsens and can lead to death, according to the National Institutes of Health's MedlinePlus website.
A registered nurse, Taylor saw what happens when the condition is misdiagnosed.
The father of a friend of hers was diagnosed with Parkinson's and was given the medicine for it. The medication nauseated him and led to loss of appetite.
Changing prescriptions didn't help.
"Nausea and vomiting continued. Dementia symptoms, balance, gait, feet sticking to the floor all worsened, too," she wrote.
"I had been researching the symptoms because in my opinion it came on too quickly for it to be Parkinson's," she added.
"I asked the neurologist if she could tell me why she didn't think this man had normal pressure hydrocephalus (NPH). I got a rather indirect answer but didn't want to press the issues because the family was present and were at such a loss with the rapid deterioration of this wonderful husband and father and grandfather."
The family by then had to provide round-the-clock care.
After questioning them, Taylor encouraged the caregivers to reveal to the doctor that the patient also had some incontinence difficulties, a third symptom of the condition (walking and mental difficulties being the other two). It's a symptom patients may be reluctant to discuss.
Eventually, a second MRI, the test to detect the condition, confirmed her suspicion. A radiologist hadn't caught it a year earlier.
The treatment was surgery to place a shunt that routes the excess cerebrospinal fluid from the brain ventricles.
In this writing business, one column can lead to another. Last month I wrote about Parkinson's disease, a condition with no definitive diagnostic test but some rather striking symptoms.
Yet some of those symptoms may be caused by another illness, St. Albans resident Kandi Taylor told me in an e-mail after the column was published.
Specifically she referred to normal pressure hydrocephalus, a neurological condition resulting from too much fluid pressing on the brain. The condition affects the elderly and if not properly treated, worsens and can lead to death, according to the National Institutes of Health's MedlinePlus website.
A registered nurse, Taylor saw what happens when the condition is misdiagnosed.
The father of a friend of hers was diagnosed with Parkinson's and was given the medicine for it. The medication nauseated him and led to loss of appetite.
Changing prescriptions didn't help.
"Nausea and vomiting continued. Dementia symptoms, balance, gait, feet sticking to the floor all worsened, too," she wrote.
"I had been researching the symptoms because in my opinion it came on too quickly for it to be Parkinson's," she added.
"I asked the neurologist if she could tell me why she didn't think this man had normal pressure hydrocephalus (NPH). I got a rather indirect answer but didn't want to press the issues because the family was present and were at such a loss with the rapid deterioration of this wonderful husband and father and grandfather."
The family by then had to provide round-the-clock care.
After questioning them, Taylor encouraged the caregivers to reveal to the doctor that the patient also had some incontinence difficulties, a third symptom of the condition (walking and mental difficulties being the other two). It's a symptom patients may be reluctant to discuss.
Eventually, a second MRI, the test to detect the condition, confirmed her suspicion. A radiologist hadn't caught it a year earlier.
The treatment was surgery to place a shunt that routes the excess cerebrospinal fluid from the brain ventricles.
Success varies, MedlinePlus states, but in the case of the family friend, it was dramatic.
"Now, we have my friend's dad back," Taylor wrote. "It took a little time, but after a few weeks he is now walking, able to cook for himself, shower, remember (except for minimal short- term memory loss) and enjoy his family again."
It wasn't Taylor's first encounter with an incorrect Parkinson's diagnosis. More than a decade ago her father, a still active 75-year-old, was prescribed medication for Parkinson's because he had tremors. The medication cured his restless leg syndrome, but as years passed there was none of deterioration characteristic of Parkinson's. At Taylor's repeated suggestion, her father finally asked if he had been misdiagnosed.
"The neurologist said, 'Well, buddy, I believe you have been," Taylor recalled.
"My point in all this is that I believe the diagnosis of Parkinson's is a catch-all," Taylor said in her e-mail. "I fully believe there are many people out there who have NPH and don't know."
Not all of us are medically trained, but we now have a wealth of resources for researching information about symptoms.
I spoke to Taylor by phone and asked if she would recommend families and patients check symptoms on reliable sources such as www.medlineplus.gov, www.myclevelandclinic.org or www.mayoclinic.com.
"Absolutely," she said.
She added another, and important, suggestion - "not to be embarrassed to name all symptoms." Patients or their families may be reluctant or fail to see the importance of mentioning urinary problems and the like, but they can be important diagnostic clues.
And if treatment isn't successful or there are any doubts about diagnosis, families should persist in seeking answers.
"What happens if they don't continue to pursue them?" she asked.
Contact writer Evadna Bartlett at eva...@dailymail.com.
