Today's post from sarahbethrn.com (see link below) is a personal account talking about a form of neuropathy called radiculopathy, which generally stems from nerve entrapment in the spine. (There is no connection to HIV mentioned.) Just as with all neuropathies, the symptoms can lead to severe pain and therefore the range of treatments most of us are familiar with. In Sarah Beth's case, her problems with the insurance company in trying to find the best treatment for her, may ring bells with some of you.
Radiculopathy and Pain Management
SarahBeth RN FEBRUARY 5, 2013
“Radiculopathy: refers to a set of conditions in which one or more nerves are affected and do not work properly (a neuropathy). The emphasis is on the nerve root (radix = “root”). This can result in pain (radicular pain), weakness, numbness, or difficulty controlling specific muscles.” (Wikipedia)
Part of my autoimmune problem includes radiculopathy. I have had pain since the beginning (November 2011), and in fact, my neurologist related a problem I had 3 years ago with a radicular pain to this disease process. Recently, the pain has been getting progressively worse. Today, the worst is the L5 nerve root. It initiates in my lower back and travels down the front of my leg to my knee and most recently to the heel of my foot. This has caused weakness and immobility of my leg eliciting yet another ER visit and multiple followups.
I had another EMG done on my leg. This test tells us whether or not there is an active disease that is damaging the nerves–this is hard to explain. Previous EMGs have showed chronic changes in the L5 nerve root, but no acute damage. This means that the nerve was damaged at one point with disease, but there is nothing new going on. This test was no different.
Basically, the neurologist thinks the autoimmune process is progressing and causing the worsening of the pain. Then comes the long trial and error process to find a medication that helps the pain. I am already taking the maximum dose of an expensive nerve pain medication called Lyrica–so a neuropathic medication is not an option. I tried Sinemet , a drug typically given to people with Parkinson’s disease to reduce tremor. The problem with this medication is that it can affect the autonomic nervous system–which it did in my case, and caused worsening of my autonomic dysfunction. Next, I tried Baclofen, a muscle relaxer typically given to people with MS. This also worsened my autonomic dysfunction. Finally, just this past weekend, I was able to begin a medication called Nucynta–a pain medication that works through multiple pathways to reduce pain and is especially effective with nerve pain. This medication is also very expensive and was denied by my insurance company 4 months ago. My pain management specialist worked hard and got the medication approved. Luckily, I have experienced some relief from the pain with this medication (FINALLY).
What is frustrating is that my doctor prescribed this medication 4 months ago and I was unable to take it because someone behind the desk at my insurance company decided they would not cover it. Even though I am incredibly thankful that I am getting some relief, I can’t help but wonder what the last 4 months would have been like without the terrible pain.
Still waiting on the effects of the immunosuppressant and the decision for IVIG or not.