Navigating the Complex World of Neuropathy with Dr. Benjamin Claytor

Podcast Transcript

Cassandra:         Hi, thanks for joining us. I'm your host, Cassandra Holloway, and you're listening to Health Essentials podcast by Cleveland Clinic. Today we're broadcasting from Cleveland Clinic's main campus right here in Cleveland, Ohio, and we're here today with Dr. Benjamin Claytor. Thanks for being here.

Dr. Claytor:        It's my pleasure.

Cassandra:         Dr Claytor is a neurologist in Cleveland Clinic's Neuromuscular Center, and today we're going to be talking about neuropathy. Before we begin, we want to remind listeners that this is for informational purposes only and should not replace your own doctor's advice. So, it's estimated that nearly 20 million people in the United States suffer from some sort of neuropathy, which in and of itself we know can be a vague term with a multitude of causes. So, Dr. Claytor, can you start off by just giving us a basic definition of what is neuropathy?

Dr. Claytor:        Well, in its most basic sense, when people use that term neuropathy, typically what they're talking about is injury or dysfunction to a nerve or a group of nerves in the peripheral nervous system. So, that's all the nerves that are outside the brain and spinal cord, the brain and spinal cord making up the central nervous system.

Cassandra:         Great. So, you mentioned nerves. Can you kind of go into the basics of what nerves it affects? I know motor nerves is one of them. What else?

Dr. Claytor:        Sure. So, neuropathies can affect different populations of nerves, and depending on what type of nerves are affected, it can lead to a variety of symptoms. So, neuropathies that affect motor nerves will cause weakness. Now that's not the only symptom. People might notice that their muscle size become smaller. They can have cramping or twitching of the muscles as well. When sensory nerves are involved, the main symptom that people experience is numbness, but they can also have pain, and the pain is often described as almost electric-like, burning, prickling, stabbing. Those are some of the kind of common adjectives that that I hear my patients using.

Dr. Claytor:        Autonomic nerves can be affected as well. So, the autonomic nervous system is the parts of the nervous system that controls all the things that we're not really aware of throughout the day. So, things like sweating, heart rate, blood pressure, all of these things our body is just sort of automatically regulating for us. If an autonomic nerve is involved, you may see problems like lightheadedness or dizziness on standing. Then there are a group of nerves that primarily go to the face. They're called cranial nerves, those are actually usually just either motor or sensory nerves. So, you can have numbness or motor problems, but specifically kind of affecting the facial region.

Cassandra:         It seems like there's so many different types of neuropathy. It can be so complex.

Dr. Claytor:        There are, probably over a hundred would an underestimation.

Cassandra:         Wow, that's crazy. So, what are some of the common conditions linked to neuropathy? I know carpal tunnel is one of them, kind of, what are those most common ones that you see?

Dr. Claytor:        Sure. So, well if we're talking about neuropathies that affect a single nerve, I would call that a mononeuropathy. Carpal tunnel is probably the most common mononeuropathy. That's where there is pinching or injury of nerve in the wrist, and it causes a lot of numbness, pain in the hand, can cause weakness, and often times people notice a lot of symptoms waking them up at night, so they wake up with a lot of numbness or pain in the hand.

Dr. Claytor:        When we're talking about neuropathies that affect more than one nerve, the term that we will often use is polyneuropathy, and typically those types of neuropathies, although not always, will start in the feet, and then as they progress, they can move up and later involve the hands. In the United States, probably the most common causes of those polyneuropathies are two conditions. One is diabetes, and the second one is alcohol use. So, alcohol can actually be directly toxic to nerves and cause nerve injury.

Cassandra:         That's really interesting. So, you mentioned diabetic neuropathy. I want to talk a little bit about that. Is that the most common form of neuropathy, would you say?

Dr. Claytor:        I would. Diabetes can lead to many different kinds of neuropathy. So, it's actually a risk factor for carpal tunnel. When people use the term diabetic neuropathy, they're typically referring to that polyneuropathy that starts in the feet, usually with numbness, burning pain, and then over time as it gets worse, it can lead to a little bit of weakness. But there are many other types of neuropathies that are associated with diabetes. So, there's actually an autonomic neuropathy that people can get, and that can cause a lot of lightheadedness on standing. It's important to think about because it's actually a risk factor for mortality. So, diabetics who have this diabetic autonomic neuropathy tend to have more heart complications. So, it's something that we always think about and ask patients about, because it can be a big impact on their lives. That's just really only a few of the neuropathies associated with diabetes there. There are actually several more.

Cassandra:         That's interesting. So, you mentioned diabetes, alcohol use for neuropathies. What are some other common causes of neuropathy?

Dr. Claytor:        Another common cause is vitamin deficiencies. So, often times when we see patients with neuropathy, especially if they've been losing weight, sometimes we'll screen for low vitamins. Diseases that affect other parts of the body can affect nerves sort of as a by-standard, so rheumatologic conditions like rheumatoid arthritis, lupus can sometimes be associated with neuropathy. There are various medications that are treating other symptoms, but nerves are sort of innocent bystandards. The most common example of that would be a chemotherapy induced neuropathy. So, when somebody receives a chemotherapeutic medication in an effort to treat their cancer or malignancy, but as a result of taking that medication, it can lead to nerve damage.

Dr. Claytor:        There are things in the environment that can affect nerves. So, like we had talked about, alcohol is a big one, but there are other toxins that can affect nerve function, things like heavy metals. Age is probably also a risk factor for neuropathy. So, if you look at who gets neuropathy, the incidence kind of keeps climbing with every decade of life. That's because nerves are very long cells. They're actually some of the longest cells in the body, and so as a product of being so long or just exposed to a lot of wear and tear over time, and then there are groups of patients where we never figure out exactly what causes their neuropathy, and that's probably because it's a little of this, a little of that, and so it's often times hard to pin down exactly what the underlying explanation is.

Cassandra:         That kind of unexplained neuropathy you're talking about, and just how often do you see that?

Dr. Claytor:        Depends on the type of neuropathy that we're seeing, and really, when you look at this group of patients who have unexplained neuropathy, this is a group that keeps shrinking over time. As we're discovering more and more things that are causing neuropathy, this group of people who we sort of label as idiopathic is shrinking. But you know, anywhere from 20-25% of patients we see with neuropathy, we may not get an exact answer as to what the cause is.

Cassandra:         Sure. Somewhat good news it sounds like, maybe if it's shrinking.

Dr. Claytor:        Yes, absolutely. Absolutely.

Cassandra:         Can neuropathy ever be hereditary?

Dr. Claytor:        It can. So, a small subset of patients can't have hereditary neuropathies. Often times there's a family history, but not always. Those neuropathies tend to be very, very slowly progressive over time. As if you think about it, people with hereditary neuropathies have had these genes their entire life, but they may not actually present with symptoms until they're in their twenties, thirties, forties, even later we've seen. That's just because their symptoms are so slowly progressive that they kind of adapt to having sensory loss and a little bit of weakness without not really knowing that something is wrong until they get older and those deficits kind of build up over time.

Cassandra:         Sure. Kind of frightening that it could hit you at any point the more you age.

Dr. Claytor:        It is. But I mean, sort of the silver lining with these hereditary neuropathies is that they are slowly progressive and that we can often help people manage some of their symptoms. So, if balance or weakness at the ankle is a problem, we have different ways of targeting those symptoms. May not have a cure for genetic types of neuropathies for most genetic neuropathies, but we do have a lot of work arounds, and we can improve people's quality of life despite not being able necessarily to cure the neuropathy itself.

Cassandra:         Sure. So, I know you talked a little bit about symptoms. You mentioned numbness, tingling, pain, kinds of the hands and feet, loss of balance. What are some other hallmark signs or symptoms of neuropathy that someone if they're listening to this and they start saying, "Oh I have that," kind of what other signs and symptoms would you classify this as?

Dr. Claytor:        Well, I think probably the most common types of neuropathy start by affecting sensory nerves first, not always, but that's sort of the typical course. So, most people with neuropathies, if it's a mononeuropathy like carpal tunnel in the wrist, or if it's a polyneuropathy in the feet, usually the first symptom that they will experience are those sensory symptoms, so pins and needles, numbness, pain. Typically, people notice that when they're at rest. So, often times, especially in the beginning when things are mild, they may not notice symptoms as they're going about their day, at their job, taking care of their kids. But then as soon as the end of the day comes, they sit down, they unwind, and that's when they often will start to notice these sensory symptoms.

Dr. Claytor:        Certainly, if anyone is experiencing any weakness, trouble with grip, trouble grabbing things, noticing that their foot is slapping when they walk, that's called foot drop, those can all be signs of neuropathy as well. Then if somebody is having a neuropathy that's affecting their autonomic nerves, usually the main symptom that they will notice is dizziness or lightheadedness on standing, and if it's severe, they can even lose consciousness because their blood pressure is getting so low.

Dr. Claytor:        But other signs of autonomic neuropathies are changes in sweating, changes in how fast the gut moves food along. So, they can have some nausea after eating, a little bit of constipation, but typically the manifestations of those autonomic neuropathies are a little bit more protean. They're often difficult for people to recognize, especially at first when it's mild.

Cassandra:         That's really interesting. So, you mentioned that numbness, particularly in the hands or feet. If someone has neuropathy, and they notice that their foot's going numb, why is that a concern? Why does it matter so much if you can't feel your hands or feet?

Dr. Claytor:        So, sensation does a lot of really important things for us that most people who don't have neuropathies don't really appreciate throughout the day. So, sensory nerves help tell temperature. They help alert us to when our limbs are being injured. So, having sensation in those limbs is often protective. People who have very severe neuropathies can sometimes injure their hands and feet and never even know it. But probably even more important is the fact that these sensory nerves help keep us upright. So, our sensory nerves are constantly sending signals to the brain and telling our brain where our limbs are in space, and if we have a problem with some of those sensory nerves, our brain just isn't getting that same information, so our brain doesn't really know what our hands and feet are doing, and that can lead to a whole host of problems. Sometimes people experience that as incoordination. But more worrisome is when people have bad position sense in their feet, it can lead to falls and imbalance, and that can lead to a whole host of other problems just because of traumas related to falls.

Cassandra:         Sure. Makes sense. If someone listening to this podcast thinks that they have neuropathy, they're suffering from it, walk us through what should they do? Should they seek primary care first? Should they see a neurologist? What are the first steps?

Dr. Claytor:        I think a primary care doctor is a very good place to start, because there are lots of other conditions that may mimic a neuropathy that that might not actually be a neuropathy that a primary care doctor would pick up on, diagnose appropriately, and may direct care in a different direction away from neuropathy. So, I think a primary care provider is a good place to start, and then based on their evaluation, they may or may not feel that a referral to a neurologist is warranted.

Cassandra:         Makes sense. So, let's say someone comes in to you and you suspect neuropathy. How would you diagnose it? What kind of tests or things would you do?

Dr. Claytor:        Sure. The diagnosis of neuropathy really starts and is rooted in a good physical and a good history. So, taking a very detailed history about when the symptoms started, how the person first noticed them, what else has been going on, taking a history about lifestyle, or occupation, or other medical conditions, or prior treatments if somebody has had cancer. So, history is really important, and then doing an exam to sort of confirm the presence of nerve dysfunction in a pattern that looks like neuropathy. Because there could be other neurologic causes that might mimic neuropathy. So, somebody who has an issue with the spinal cord, they may have numbness in their feet but the nerve function in the feet is intact. The issue is actually in the central nervous system in the spinal cord. So, doing a physical exam, trying to confirm that this is a peripheral nervous system processes is really important. A lot of times the diagnosis can be made just on a history and physical exam.

Dr. Claytor:        If further testing is needed, often times patients with neuropathy will undergo blood testing. Sometimes we will actually evaluate the electrical function of the nerve itself, and that's with a procedure called an EMG or electromyography. This is a test that actually looks at how the nerve is functioning, and how the nerve and muscle are communicating with each other. Then probably more rarely we need to do even more invasive testing. That would be doing things like a nerve biopsy, taking a piece of the nerve and actually looking at it under a microscope, looking for any changes that can suggest a diagnosis, or sometimes we'll also do skin biopsies, because your skin has all kinds of small nerve fibers that are distributed throughout the skin. By doing biopsies, we can actually count the number of nerve fibers that are in that particular biopsy segment and get an idea as to whether or not there is some nerve dysfunction going on.

Cassandra:         Wow, that's really interesting. The whole nervous system is so fascinating with all these different nerves that could malfunction or backfire or anything like that. Okay, so let's talk about treatment. If you suspect someone has neuropathy that comes to see you, kind of walk us through the courses of treatment that you would maybe try or suggest.

Dr. Claytor:        It really depends on the underlying cause of neuropathy. So, if the individual had, let's say a hereditary cause of neuropathy that didn't necessarily have a specific treatment or cure. For those individuals, we're really talking more about palliating their symptoms. So, if they have weakness of the ankles, talking about how we can brace their ankles to make them feel more steady. If they're having problems with balance, talking about things like physical therapy to try to give them exercises to improve that. If pain or sensory loss is a problem, sometimes there are medications that can help with that.

Dr. Claytor:        On the other end of the spectrum are autoimmune causes of neuropathy. So, these are neuropathies that are due to the immune system attacking the nerve. When we diagnose someone with an autoimmune cause of neuropathy, that's a very different treatment course, because we're actually talking about treating the cause with medications that lower or alter the function of the immune system.

Dr. Claytor:        Then most neuropathies tend to fall somewhere in the middle of that. So, if we can identify the offending agent, if it's a medication, if it's something in the person's lifestyle, heavy metals, something like that, sometimes we might have a specific treatment for that. If it's diabetes, then often times exercise and weight loss may actually lead to stabilization or improvement in the neuropathy. Then, regardless of the cause, we're always talking about how we can improve symptoms and improve somebody's life and well-being despite the presence of neuropathy.

Cassandra:         Sure. So, what other specialists are involved in managing neuropathy? You kind of touched on it a little bit. So, for instance, I know someone who has neuropathy of the feet, and they see a podiatrist to make sure that their toenails are cut correctly. What other physicians or kind of practices can you keep in your toolbox to help you manage neuropathy?

Dr. Claytor:        Physiatrist and orthotists are often providers that we call on for additional help, especially when somebody has a lot of weakness or mobility problems, because they are really great at thinking about how to provide either bracing or modifications in people's lives, or in their homes to try to improve their ability to get around. Physical therapists are also providers who we cannot do without. Because so many patients with neuropathy have balance problems, a physical therapist is really good at maybe not making somebody's balance better, but I think what physical therapists can often do is give people a little bit of insight into their weaknesses. So, by alerting a patient to where they're weak, or where they may struggle, or in what situations they might have more difficulty, I think that they're able to sort of develop workarounds for some of those problems. So, physical therapists are, are really vital in taking care of patients with neuropathy.

Dr. Claytor:        Then, rarely we'll have surgeons involved, too, like if we're going to do a nerve biopsy, that would be sort of the role a surgeon could play in diagnosing and helping patients with neuropathies. Then we're always trying to enlist the help of patients, primary care doctors. If it looks like there is a chronic medical condition like diabetes that's causing neuropathy, then we always like to get everyone on the same page, and try to find ways to adequately manage these other health conditions that may inadvertently be causing nerve injury. So, primary care providers are really, really an important part of this equation, too.

Cassandra:         Absolutely. It seems like a team effort.

Dr. Claytor:        Absolutely. Absolutely. I mean, these are complex problems that lead to a lot of symptoms, and often can lead to a lot of disabilities, so we do really need to enlist the help of a lot of different individuals.

Cassandra:         Absolutely. So, neuropathy ever be life threatening?

Dr. Claytor:        Very rarely. So, there are some autoimmune causes of neuropathy. There's one called Guillain-Barre. This is a neuropathy that comes on very quickly over the course of several weeks. If it's very severe, it can affect muscles that control breathing and swallowing, and you can imagine, that could potentially be life threatening, but typically not. There are these very few rare examples of quickly progressing neuropathies. Usually they're caused by autoimmune disease, but usually not life threatening.

Cassandra:         What about the risk of permanent nerve damage if it goes untreated?

Dr. Claytor:        That's a great question. The peripheral nervous system has the ability to regenerate, and that's something that we can often use to our advantage. So, if somebody has had a nerve injury, it doesn't always mean that it's permanent. Now, that ability to grow new nerves, to regenerate, to heal, is not an exhaustive. So, if somebody has had a nerve injury, and this has been something that's been going on for years, and years, and years, well typically they're going to be left with some degree of permanent symptoms.

Dr. Claytor:        Now, if we can get to the underlying cause of the neuropathy, treat it in some way, then they might see some improvement over time, improvement over weeks, and months, and years, but typically if this is a process that has been going on for more than two, three, four years, there's usually going to be some degree of permanent injury to the nerves, which is I think why it's important to seek out an opinion if you think you may have a neuropathy, because the earlier that we can see people, the earlier that we can identify the underlying cause, the prognosis is better.

Cassandra:         Is there ever a risk of amputation if it goes untreated for permanent nerve damage?

Dr. Claytor:        That's typically seen in patients who have diabetes, because like we had mentioned, if they don't feel their extremities, they may be prone to injuring them without knowing them. Then patients with diabetes also tend to have a lot of vascular disease as well, and their healing abilities are compromised. So, if they injure themselves, they're not aware, it could set up an infection. Then if that infection takes hold, it may be difficult to treat. That's the typical scenario where we see neuropathies contributing to amputations.

Cassandra:         So, the last thing I want to talk about here is prevention. So, if someone's listening to this podcast and they're trying to be mindful about ways to reduce their risk of neuropathy, or prevent it from getting worse, you kind of touched on this, but what are some tips or advice that you would give to help them kind of just prevent this from getting worse?

Dr. Claytor:        That's a great question. I always tell my patients that what's healthy for you is healthy for your nerves. So, it's making sure that you eat a varied diet. There is actually some pretty good evidence about the Mediterranean Diet and reducing cardiovascular and stroke risk. So, I believe that's also probably beneficial for nerve function as well. Maintaining a healthy weight is also really important. There is some research coming out to show that obesity and having an increased waist circumference might be associated with neuropathy, and then staying active and exercising is always a big part of this as well. So, if you think about all the things that are going to be good for your heart, good for your lungs, and good for you, a good chance that it's also going to be good for your nerves as well, and may make the risk of getting neuropathy later in life a little bit less.

Cassandra:         Absolutely. Always make sense. It always goes back down to exercise, eat right, don't stress.

Dr. Claytor:        We know the things that can keep us healthy, actually doing them every day and putting it into practice, that's much more difficult. I think we all struggle with that, me included.

Cassandra:         Agreed. Great. Well, that's all the time we have today. Thanks for listening. Thank you, Dr. Claytor, for being here.

Dr. Claytor:        It's my pleasure.

Cassandra:         To learn more about neuropathy and treatment options available, visit Clevelandclinic.org/neuromuscular. If you want to listen to more Health Essentials podcast by Cleveland Clinic experts, subscribe on iTunes or visit Clevelandclinic.org/hepodcast, and don't forget, follow us on Facebook, Twitter, and Instagram at Cleveland Clinic, all one word, to stay up to date on the latest health tips, news, and information. Thanks for listening.