Balance Issues, Peripheral Neuropathy, and Parkinson’s

I have balance issues. I also have Parkinson’s disease and severe peripheral neuropathy.

According to the Mayo Clinic, peripheral neuropathy is caused by damage to the nerves that are outside of the brain and spinal cord, also known as the peripheral nerves. It causes "weakness, numbness and pain, usually in the hands and feet. It can also affect others areas and body functions including digestion, urination and circulation."1

Parkinson’s, diabetes, traumatic injury, and a host of genetic diseases are causes of peripheral neuropathy and balance issues. Peripheral neuropathy causes balance issues. If this all sounds like a chicken and egg joke, let’s just say it’s complicated.1,2

High risk of falling

My balance issues are quite severe and I am at high risk of falling. I have almost no feeling below my knees and my physical therapist thinks peripheral neuropathy is the major factor in my balance problems.

My neurologist thinks it’s Parkinson’s and neuropathy. Peripheral neuropathy has multiple causes and treatment varies across the causes, so I decided to try to find out the root cause of my neuropathy.

Consult with a specialist

I consulted a neurologist who is a neuropathy specialist. His first impression, based on a physical examination and family history, was a genetic disease with the strange name of Charcot-Marie-Tooth (CMT).

CMT is one of the most common hereditary motor and sensory neuropathies. It usually starts with pain, tingling, and burning in the feet or hands followed by weakening of muscles and eventually numbness and distorted muscles. There is currently no cure for CMT.3

There are multiple different types of CMT. Type 1 occurs when there is damage to the myelin sheath insulating axons. Whereas type 2 is caused by direct damage to nerve axons themselves. CMT type 2 is also referred to as "axonal" CMT.4

The test results

Standard genetic tests for CMT covering 105 genes found no positive CMT variants. There are CMT type 2 variants not included in the readily available screens.

I have type 2 diabetes but my A1C is well managed and the neurologist felt my blood chemistry was not affected enough to cause the major neuropathies observed. My electromyography (EMG) tests showed neuropathy associated with Parkinson’s, CMT, and orthopedic issues.

An MRI of my lumbar and cervical spine shows bulging discs and nerve compression. The EMG indicates possible neuropathy in hands and thighs.

Treating the source

Some sources of neuropathy have no treatment at this time while other sources can be treated.  Since I show multiple neuropathy sources, it’s important to figure out what percentages apply to my neuropathies and how long I’ve had each. The longer neuropathies exist, the less likely that any treatment will relieve them.

So, I get to have more tests with more specialists. First up, a consult with an orthopedic surgeon to see if spinal surgery will relieve my compressed nerves and the likelihood of successful surgery given my age, illnesses, etc.

Finally, back to the neurologist for a frank discussion. Most likely result: live with my neuropathy and balance issues. Although my quest to find answers may look futile, at least I will have come to a conclusion and maybe partial relief.

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