Chances are, if you’re reading this and you’re already in your late 20’s or early 30’s (or older) and you have 
• Charcot-Marie-Tooth disease
• Hereditary Neuropathy with Liability to Pressure Palsies (HNPP)
• Dejerine-Sottas Disease (DSD)
• Hereditary Motor Neuropathy (HMN)
You were probably diagnosed in your teens or possibly earlier. But if you or someone you know is in their teens (or younger) and they have a combination of the following symptoms:
• Pain in their feet and hands
• Weakness and loss of muscle mass (especially in their calves or lower legs and feet)
• Impaired sweating
• Insensitivity to pain
• Foot deformities such as hammer toes or high arches
• Scoliosis (curvature of the spine)
It might be time to do some genetic testing to determine if they have a form of hereditary neuropathy.
What is Hereditary Neuropathy?
Hereditary neuropathies are inherited disorders that affect the peripheral nervous system, often resulting in peripheral neuropathy. Hereditary neuropathies can affect you in many different ways but they are usually grouped into four different categories:
• Motor and sensory neuropathy – affecting movement and the ability to feel sensations
• Sensory neuropathy – affecting the senses
• Motor neuropathy – affecting the ability to move
• Sensory and autonomic neuropathy – affecting the ability to feel sensation and the autonomic nervous system (the system that controls your ability to sweat, your heart rate, your body’s ability to regulate your blood pressure, your digestion, etc.)
As the names imply, they are classified based on exactly which nerves are affected and which functions are impaired.
The most common form of hereditary neuropathy is Charcot-Marie-Tooth disease (a motor and sensory neuropathy) affecting 1 out of every 2500 people. Most people with CMT are diagnosed before they reach their 20’s but their symptoms can begin years earlier. CMT may take a while to diagnose because the symptoms can wax and wane over a period of years.
How Can I Find Out if I Have Hereditary Neuropathy?
The only way to diagnose hereditary neuropathy is through blood tests for genetic testing, nerve conduction studies and nerve biopsies. If you’ve been diagnosed without going through any of these tests, you probably don’t have a good diagnosis.
Your doctor should take a very thorough history and physical. In order to really determine if you are at risk for hereditary neuropathy, you need to look as far back as three generations. However, a word to the wise, even if you hereditary neuropathy has not shown up in your family previously, all inherited diseases have to start somewhere. You could just be the person starting it in your family. That makes genetic testing even more important.
Are Hereditary Neuropathies Curable?
There are no cures for the various types of hereditary neuropathies. Treatment is usually to treat the symptoms and give your body the support it needs to function as normally as possible. That usually means physical and occupational therapy, as well as
• Care and correction for your muscular and skeletal systems
• Treatment for any other underlying medical problems
• Nutrition education and diet planning
• A step by step exercise regimen
• Medication as needed or necessary
A highly skilled medical professional well versed in diagnosing and treating nerve damage is your best place to start for treatment of your Hereditary Neuropathy. An excellent place to start is with a NeuropathyDr® clinician. They have had great success in treating patients with hereditary neuropathy in all its various forms.
If you have a confirmed diagnosis of Hereditary Neuropathy or think you may have it, seek treatment now. While you can’t be cured, you can take steps to treat and lessen your symptoms and greatly improve your quality of life. Contact us today for information on how your Hereditary Neuropathy can be treated, your suffering lessened and exactly how to find a NeuropathyDr® in your area.
If you have any of these conditions:
· Diabetic neuropathy
· Peripheral neuropathy
· Post-chemotherapy neuropathy
· Autonomic neuropathy
You’ll want to keep this information handy when you’re starting an exercise program and adhere to these guidelines to make sure you don’t do more harm than good for your health:
Study This Checklist
Keep this “quick and dirty” checklist of things to think about when you’re ready to start exercising with you and refer to it often to make sure you’ve done what you need to do to have a successful exercise program:
– Talk to your doctor and get a medical clearance from him before you start any kind of exercise program – regardless of how “light” you think the exercise is.
– If you’re a diabetic, always test your blood glucose level before, during and after you exercise.
– General guidelines for exercising with caution:
· Always warm up and cool down
· Stretch and warm up your muscles before you start
· Know your target heart rate and stick to it – don’t exceed what you know it is safe for you to do
· Drink lots of water (regardless of the outside temperature)
· Get a good pair of exercise shoes and make sure they are properly fitted
· Keep a snack with you, protein and low glycemic carbs like maltodextrin
· Wear some kind of medical identification tag that tells people what your medical conditions are
Talk to your local NeuropathyDR™ doctor or physical therapist to find out how ready you really are for exercise and enlist their specialized knowledge in designing a safe exercise program before you start. You’ll get so much more out of it and you won’t hurt yourself and start the new year with a painful sports injury that could have been avoided with a little proper planning.
In our last few posts we’ve talked at length about the virtues of regular exercise for helping with the symptoms of
· Diabetic neuropathy
· Peripheral neuropathy
· Post-chemotherapy neuropathy
· Autonomic neuropathy
But what we haven’t addressed is that, depending upon what part of your you’re your neuropathy affects, you may need to modify your exercise routine to keep from developing some more serious problems.
Here’s something else to consider when designing your exercise routine:
Think About Your Heart and Circulatory System
If your neuropathy affects your heart or any part of your circulatory system, your exercise options could be limited. Discuss your options with your doctor before you start exercising. There are many options for exercise that will have a dramatic positive effect on your health but not push your heart beyond its limits.
Watch Out For Temperature Extremes
Neuropathy, specifically autonomic neuropathy, can have an adverse effect on how well your body regulates its temperature. If you don’t sweat like a normal person (you either sweat too much or not enough) your body is not regulating its temperature as it should. Also, avoid exercise in extreme temperatures (i.e., don’t do “hot” yoga or go for a walk when it’s freezing outside). Your neuropathy is going to limit how well your body can actually adjust to those temperature extremes.
And drink lots of water. A well-hydrated body is better equipped to control its temperature.
Next time, we’ll talk about a checklist of things you need to keep at the front of your mind as you design your exercise program for the new year.
Getting more exercise…
Paying special attention to the condition of your feet…
Here are a few more things to do to help you manage your nerve pain and ensure a good outcome from your course of treatment for neuropathy:
About Taking Targeted Supplements
Vitamins B-1, B-12, B-6 and folic acid are all vital to healthy nerves. We have found certain combinations in professionally tailored packages for each case often works best. If you eat a healthy diet, you may still not be getting the recommended daily amount of some vitamins and other nutrients. Talk to your doctor first, though, before you take any supplements to make sure they won’t interact badly with the medications you’re taking.
You can easily check for drug-nutrient interactions.
Special caution is advised in thyroid disease and cancer therapies during neuropathy care.
Control Your Alcohol Intake
High intake of alcohol is a toxin to your nerves. And if the nerves are already damaged, it’s even worse. Some people think that a drink a day is good for your health. I respectfully disagree. If you have nerve damage, that’s a chance you don’t need to take. Don’t drink more than four alcoholic beverages a week if you suffer from peripheral neuropathy, and none would be even better
That’s Why NeuropathyDR™ Doctors and Physical Therapists are trained
Before you begin any self-care regimen or add supplements, herbs or vitamins to your healthcare regimen, always talk to your professional first. Virtually everything has some side effects so make sure that what you’re planning to take won’t cause you more harm than good.
And Above All Else…
Don’t give up. Self-care is vital to managing your neuropathy. While you may need a combination of these self-care tips and medication, sorting out yourself is not always wise.
Contact a local NeuropathyDR™ doctor or physical therapist to explore treatment options in addition to taking care of yourself.
And if you can’t find one in your area yet, contact my team at 781 659-7989
More Clinics are being added every week!
As part of our continuing discussion on self-help for managing your nerve pain if you have peripheral neuropathy, here are a couple of more tips:
Walk, or Better Yet Cycle As Much As Possible
You don’t have to run a marathon or even walk one. You don’t have to race a titanium frame bicycle. Just move the big muscles in your legs as often and as much as you possibly can. Exercise, even very gently at first improves circulation and improved blood flow to the legs and feet will help nourish damaged nerves.
A Warm Bath Can Do Wonders
Warm baths increase blood flow; reduce stress and aid in relaxation. All three of these benefits will make the pain a little easier to tolerate. But a word to the wise, check the water temperature with your elbow or your wrist before you get in the bathtub. The nerve damage in your feet makes them an unreliable source for judging temperature. Use a thermometer. We like 100 degrees Fahrenheit with some added minerals and antioxidants.