Why is it so hard to get help with peripheral neuropathy?
In 2007 we began working with peripheral neuropathy patients. One thing that has not changed is how we hear over and over how difficult it is to get help. The struggle to improve their quality of life, to avoid a decline in what they can do; a mental break from worrying about their future.
Some relief from the constant symptoms.
This might be old news to those who suffer from neuropathy, but even getting a diagnosis can be difficult. First, there is usually a mention of the “thick” sensation under the toes to your General Practitioner. Then, the diagnostic testing in the Neurologist’s office. For those on chemotherapy, you might be asked if you have symptoms during active chemotherapy by your Nurse or Physician. The usual testing (and this should be done, make no mistake) of nerve conduction and electromyelogram can pick up large fiber neuropathy with fairly good accuracy. Occasionally, it can also give the examiner an idea if there is any nerve root involvement from low back problems as well. It does not pick up small fiber neuropathy!
Small fiber neuropathy can be diagnosed with a small tissue biopsy.
This biopsy is sent to a lab for analysis. The lab will actually count the nerve fibers in the sample. Peripheral neuropathy would lower the number of fibers in the sample and confirm the small fiber neuropathy diagnosis. There is also some additional testing to check for autonomic or autoimmune neuropathy (especially if you have redness or swelling in the extremities) and potential additional treatment options for the autoimmune neuropathy.
Many times, however, your doctor will make the assumption that you have small fiber neuropathy based on your medical history and typical exams. If you have all the symptoms of small fiber neuropathy and you have negative NCV/EMG tests, in all likelihood they would think you have small fiber neuropathy. They may not want to make you go through a biopsy even though it really is not that bad of a procedure. The most likely reason being that it really is not likely to change the course of care for you unfortunately. It still might be a good idea to get the biopsy so you have an actual firm diagnosis for insurance reasons, time off work etc.
Almost all roads lead to the same treatments.
And these treatments include but are not limited to:
• Therapy options are pretty limited (make sure to state it is not a comprehensive list)
o Opioids (potentially)
o For autoimmune immunoglobulin infusion
Expensive though for insurers so…
o PT for balance/strength complaints
o Topical compounded pharmacy creams
These can have some of the medications above along with ketamine or lidocaine or some other analgesics
So it all boils down in the literature to treatments with the first 4 on the list 90% of the time. Click the image to enlarge the view.
Duloxetine is trademarked as Cymbalta. Amitriptyline is trademarked as Elavil. Pregabalin is also known as Lyrica although many clinicians will also prescribe Neurontin or its generic Gabapentin.
So as patients search for better results with care, they should know that if they are on these medications unfortunately there will not be a whole lot else out there in regards to front line medication management for neuropathy pain.
That’s why patients bounce around from doctor to doctor because they have already tried Cymbalta, they are currently on Gabapentin and it’s not cutting the mustard for symptom relief.
The other crazy thing is the emphasis on neuropathic pain, diabetic pain, pain pain pain. Many people with peripheral neuropathy DON’T HAVE PAIN!
They may have some discomfort but what really is concerning to them is the advancing numbness, weakness and loss of body position awareness in their feet which negatively affects their balance and mobility. Since the majority of length dependent neuropathies manifest in the feet first, especially in the balls of the feet, the ability to drive safely is a real and significant concern.
There are no drugs that can “numb” numbness. So those patients without significant pain can oftentimes feel even more out of luck as the medications prescribed for neuropathy only target pain.
After trying for so long and often being disappointed, some people go into a spiral of inactivity.
As a clinician with Realief, I advise people with neuropathy to keep searching for treatments and therapies. We often say in the clinic that anything that helps is a blessing! At the Realief Clinic we address almost all of the symptoms of neuropathy including pain, numbness and balance concerns.
Timothy Kelm, DC, is one of the clinicians at Realief Medical PA. Since 2007 (or, as he would put it, before you ever saw an advertisement for neuropathy therapy) he has worked with many patients with peripheral neuropathy. He also trains new clinicians for Biolyst LLC, a medical company working for solutions for peripheral nerve damage. He has presented at the University of Minnesota Gynecological Oncology Research Symposium and participated in Tier One research with neuropathy therapy for laser treatment for neuropathy in regards to symptom control. He also lectures in the US to patients on peripheral neuropathy and neuropathy relief. He can be reached by contacting his patient coordinator Amanda via email, firstname.lastname@example.org or by phone 952-446-7424.