How Neuropathy Patients Can Cope with a Diagnosis

Ezekiel Lim avatar

by Ezekiel Lim |

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coping with a diagnosis

The presence of peripheral neuropathy symptoms such as numbness, tingling, and burning sensations in the hands and feet might lead to a familial amyloid polyneuropathy (FAP) diagnosis. With the onset of such symptoms, patients may become concerned with the impact that an official diagnosis may have on daily life and mental health. Here are some ways in which patients suffering from neurodegenerative diseases may cope with the initial diagnosis of their condition.

What we can learn about responding to a diagnosis

As the spread of COVID-19 coronavirus cycles through the news, viewers across the world scramble to understand the symptoms of the illness and determine whether they are likely to be diagnosed. Similarly, patients of all types of underlying conditions try to understand the link between symptoms and possible diagnoses. It is also important for patients to understand that the presence of symptoms may not actually be the onset of an illness. They may be the result of other life factors, like stress or diet.

My mother-in-law was initially diagnosed with FAP about eight years ago. I have been a part of the family for six years. When I first met my mother-in-law, she was still acquainting herself with the required treatments and their side effects. During this time, she had begun taking gabapentin and was in the process of beginning IVIG.

Before this, back problems and the symptoms of peripheral neuropathy led to her needing a wheelchair for mobility at times. As her symptoms worsened, she eventually began using a motorized wheelchair for local travel. Her diagnosis brought the family together as a functional unit that provided mental and emotional support, as well as physical assistance. This brought each immediate family member to the forefront as a caregiver.

How patients may cope with an initial diagnosis

When coping with a new diagnosis, it is important for patients to first pause and give themselves time to process the information. This will allow patients time to reflect and focus on not drowning in rumination at such serious news. Family members and close friends play an integral part in supporting the patient. At the point of diagnosis, they’ve begun the transition into caregiver and support roles. The patient needs to have a close circle of friends and family to provide emotional support.

With the initial diagnosis, the patient and caregivers must be diligent in educating themselves on the illness, its symptoms, and treatments. This will allow both parties to formulate a plan of action for the potential rigors of daily life associated with a neurodegenerative disease. Once the patient and caregivers have begun the education process, they must use this knowledge to anchor the patient-caregiver relationship. With this information, patients may successfully begin coping with an initial diagnosis and plan for treating the illness and navigating daily life.


Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.


Bill Burnette avatar

Bill Burnette

I am unable to find a recommended diet plan for FAP patients. I have read all the recommendations for fruits and vegetables, lean meat, fish etc and the what not to eat foods, but what are the specific food recommendations for each daily mean. In other words "A laundry list of options for each meal.

A list of options for each meal allows me to pick and choose based on my taste. Most diets I read about on line, get my attention by usually saying "all these foods are in your cupboard". I do not want to rain on the dietitians parade but the recommended foods are not in my cupboard and most likely not in the standard households cupboard but I can stock my cupboard/frig with what I need; if I knew what that was.


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