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Dear Doctor:

I have had peripheral neuropathy in both feet for about three years now. I have finally been referred to a neurologist. I have been suffering with no relief from the pain at all. Every doctor I have seen has not wanted to prescribe anything. I am excited that I finally have a referral, even though my appointment is not for about 3 months. Could you tell me, should I keep a diary of my condition daily until my appointment? Would this be helpful to the doctor and what can I do to get the most out of my first appointment. I am so frustrated with the pain, numbness, loss of coordination, dropping things and exhaustion. Please any advice would be greatly appreciated. Thank you!
- Karen K.

Dr. Mazen M. Dimachkie Answers:

Karen,
You bring up several important questions relevant to all patients suffering from peripheral neuropathy. Peripheral neuropathy can affect different types of nerves, each being responsible for myriad of symptoms. Manifestations of peripheral neuropathy are commonly sensory in type (presenting as lack of feeling, tingling that is not painful, and pain of different types), but motor nerve involvement (presenting as muscle weakness and lack of coordination) and autonomic involvement (presenting as dry eyes and mouth, drop in blood pressure and diarrhea) may also occur. Severely impaired sensations may also result in poor gait balance and increased risk for falls.

Treatment options vary with the neuropathy symptoms a patient presents with. While some patients with neuropathic pain respond to simple over-the-counter analgesic drugs, others may benefit from topical medications that have limited side effects. For patients presenting with neuropathic pain, two main classes of drugs are used to provide pain relief--antidepressants and anti-seizure medications. These medications require slow titration to minimize their side effects. There are several options from first line choice to second line all the way to fourth line options. This is because no one drug works the same for all patients; and, it takes a process of trial and error to find the most effective medication (or a combination of them) for any given patient.

It is therefore important that you visit with a neurologist who is well versed in the diagnosis and management of peripheral neuropathy. This is usually, but not exclusively, a neurologist focused on neuromuscular diseases. As you may know, there are many causes of peripheral neuropathy.  The causes of neuropathy can be classified based on the symptoms, but other factors are also important:

- Which part of the body did the neuropathy start in?

- How rapidly is it progressing over time?

- Is there any toxic exposure such as alcohol, chemotherapy, etc.?

- Are there any medical illness such as diabetes, pre-diabetes, cancer, etc.?

- Is there a family history of peripheral neuropathy?

- Is this a disabling neuropathy?

In addition to the history, the clinical examination can help identify the cause of neuropathy based on the types of nerve fibers affected. Therefore, the neurologist can determine which laboratory tests are likely to uncover the cause(s), understanding that 25 percent of neuropathies have no identifiable cause (also referred to as cryptogenic sensory peripheral neuropathy).

The electromyogram (EMG) is an important test; it confirms whether the neuropathy involves the myelin sheath (i.e. the insulation) or the axon (i.e. the cable). Myelin damage can occur from genetic or acquired diseases. Acquired disorders of myelin may respond to drugs that suppress the immune system.

Therefore, be prepared at your visit to share with your neurologist a good history as outlined above. It should include how and where the symptoms began and how they evolved over time. It is also important to share with your doctor how the neuropathy has affected your mood, sleep and function. You should bring medical records from other doctors that have tried to help you before.

Be ready to share with your doctor the names of medications you have tried in the past to control your neuropathy. It is not uncommon in the doctor’s office to forget the questions that are “bugging” you. So please write down a list of questions such as: “what is the cause of my neuropathy?,” “what are the treatment options?,” and “what does the future hold for my neuropathy?” You should be able to come out of the doctor’s office armed with information that will help you cope with your neuropathy.

Mazen M. Dimachkie, M.D. is Professor of Neurology and Director of the Neuromuscular Division of the Department of Neurology at the University of Kansas. He is also Co-Director of our Association-Designated Neuropathy Center at the University of Kansas.

 

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