Patient Stories

Jeffrey’s Story: Life Is Good

“Optimism is the faith that leads to achievement; nothing can be done without hope.” —Helen Keller

 

The Diagnosis

I was diagnosed with idiopathic peripheral neuropathy in August 2021.

Two years prior to a diagnosis, I kept feeling that my socks were bunching up in my feet. I started buying new sneakers and socks. But the feeling only got worse over time. I went to my podiatrist, and he said it was probably neurological, and I should ask my primary care physician (PCP). I had a physical coming up with my PCP, so I asked him about it. He agreed, probably neurological, and I should see a neurologist.

It took a while to get an appointment with a local neurologist, but I was able to see one in August 2021. He gave me extensive blood tests and examined me and told me I had idiopathic peripheral neuropathy. Idiopathic means, “no known cause,” which also means it cannot be cured, and you can only treat the symptoms. I got this diagnosis the week that I retired. I had been looking forward to a long, happy retirement traveling and doing whatever I wanted to do whenever I wanted to do it. After I got my diagnosis, my PN kept getting worse. I started to get pain in my hands, and I had shooting pains in my lower legs and arms now.

Researching PN

I started researching peripheral neuropathy (PN), reading books and whatever I could find on the internet. I learned that PN is progressive in most cases and that in some cases you could end up in a wheelchair and not being able to drive. When I learned that, I started to imagine this was going to be my future, in a wheelchair and not being able to drive. This was depressing. I was not a happy camper to say the least. When I asked my neurologist what was my prognosis, he said it was not possible to know. PN is so individual, that every person’s case is different. My future was unknowable.

“A strong positive attitude will create more miracles than any wonder drug.” —Patricia Neal

I found Peripheral Neuropathy Success Stories! on Facebook, and I learned that people do live successful lives with PN. I realized that like everything else in life, “attitude” is crucial in dealing with PN. I decided to live every day to the fullest and not worry about the future.

One thing I do for myself that helps me feel better both mentally and physically is to start out every day with some exercise. If you have a spouse or significant other and they will exercise with you, then it is quite a bit more fun. Luckily my wife really enjoys exercising with me every day.

Reading for Knowledge and Inspiration

If you are looking for inspiration to get your exercise program going, read Younger Next Year by Chris Crowley & Henry S. Lodge, MD. I read it and I was literally inspired by it. If you follow the book’s recommendations, you can delay mental and physical aging dramatically and greatly reduce your chance of significant illness and injury due to aging. Although this is not a book on peripheral neuropathy, the experts on PN tell us that exercise is one thing we can do to help improve our PN symptoms without medication. This book is a page turner and highly recommended.

This book has totally changed my attitude about exercise from something that was a chore to what I now consider to be a privilege. Now I am doing cardio and strength training five to six days a week first thing in the morning. YouTube has hundreds of free exercise routines, and my wife and I follow these every day during our exercise time. We love it!

One of the good books I read was Peripheral Neuropathy by Norman Latov, MD, PhD, which said that taking statins can cause PN. Based on my research on this topic what I have found there is no universal agreement that statins cause PN. Some doctors believe it does, some don’t, and some don’t know. Some research shows a correlation, and some research does not. I have been taking statins for 35 years to lower my cholesterol. The book recommended to stop taking statins for 90 days and see if your PN improves. I talked to my PCP, and he said it would be no risk to stop taking statins for 90 days. I did stop taking statins for 90 days and my PN stopped getting worse. The shooting pains stopped, and the pain in my hands stopped. Now that it has been 90 days, I have to go visit my PCP and decide what I will do about taking statins. At this writing, I don’t know what I will decide. But I will make the best decision I can with the help of my doctors.

There is Hope

I continue to be involved in communities of PN on Facebook. I continue to research and read books on PN. And my life is full. I have decided that PN will not get me down or stop me from doing whatever I choose to do with the rest of my life. The future is bright.

Disclaimer: This Patient to Patient column shares the view of the writer and is not intended to be diagnostic or prescriptive. Patients are encouraged to seek advice from their own private physician. 

For more information on Living Well with Peripheral Neuropathy, click here.

 

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