Just because doctors haven’t mentioned peripheral neuropathy as the cause of your pain, doesn’t mean you can’t have it.
“Peripheral neuropathy” means disease of the nerves of the peripheral nervous system, and I know at least one person who’s been recently diagnosed with this — after it was missed for the past four years by a steady stream of doctors: my father.
For about four years he’d been complaining of pain in his legs, and several doctors attributed this to problems with his low back, including spinal stenosis. Two endoscopic back surgeries didn’t help.
Another doctor said it was from osteoarthritis of the hip and recommended a hip replacement, which my father had; it did no good.
He’s had three knee replacement surgeries by two orthopedic surgeons who both said that the leg pain was caused by osteoarthritis in his knees.
The second surgeon, who did the third knee surgery (a revision) said that the pain could very well be from a failed knee replacement.
What seems to make it easy for doctors to miss peripheral neuropathy is when the patient actually has these other conditions, which are easily proven with X-rays and MRIs.
My father has had more than one primary care physician over this time period, who named back and knee problems, as well as old age, as probable causes of the leg pain.
Other proposed explanations for the leg pain was a knee infection, and allergic reaction to the knee replacement device.
Early on, an adverse side effect to my father’s use of a statin drug was suspected, but ruled out after he went off the statin but the leg pain continued.
Strangely, none of these many doctors came up with, “You know, this very well could be peripheral neuropathy. Let’s aggressively pursue this possibility.”
Peripheral Neuropathy Doesn’t Necessarily Work Alone
If you have degenerated knees or lumbar discs, this doesn’t mean you can’t also have peripheral neuropathy adding to your lower body pain, burning and tingling.
Peripheral neuropathy is associated with diabetes; diabetes is the most common cause.
A doctor may rule out peripheral neuropathy if you don’t have diabetes (my father doesn’t), and especially if you have other “differentials” that can explain the leg pain, such as degeneration of the lumbar spine as shown on imaging tests.
How did my father finally get diagnosed with peripheral neuropathy?
His assortment of doctors would have continued to miss this had he himself not decided one day to review his medical records over the past four years.
He’d had an EMG about three years ago and the doctor said he had “nerve damage.” However, that doctor, plus his primary care doctor at the time, didn’t further pursue this “nerve damage,” and thus, my father had thought nothing of it.
My father found the words “peripheral neuropathy” in the paper work as a diagnosis, and was floored that nothing ever came of this; no further workups or recommended drugs.
He immediately contacted his newest PCP, who in turn ordered blood tests to rule everything else out.
Within 24 hours of the blood tests, my father was prescribed Nortriptyline, a tricyclic antidepressant that’s also used to suppress the pain of peripheral neuropathy.
At the time of this writing, he has not yet gotten the prescription because it was ordered late Friday afternoon.
Why, after four years, did so many doctors not think of peripheral neuropathy?
And why didn’t the EMG neurologist pursue it? It’s because sometimes, the patient knows more than their physician.
