I was diagnosed with relapsing remitting multiple sclerosis in 1999. My first and only symptom was a burning sensation on my left leg. It was controlled very well after some trial and error with 1200 mg of gabapentin. I also had started on Avonex.
In 2003 I had a relapse resulting in dragging my right leg when fatigued. I switched to Rebif, had 3 days of Solumedrol, but the right leg issue persisted.
In 2008 I had a major relapse which left me unable to walk from horrible balance issues and weakness, nystagmus and loss of sensation ( about 75% ) and horrible burning & pins and needles pain in all extremities. The nystagmus has improved mostly. I've had PT which helped with the weakness.
I switched to Tysabri until 2013 when I tested JC+ and am now on Rituxan.
I've had no additional relapses, but the pain is horrible. I'm now on 1800 mg Gralise, 300 mg Lamictal. I've previously tried Lyrica (150 mg 2X), Cymbalta (60 mg), Nortryptaline and I'm getting only minimal relief. My pain level is usually an 8.
My neurologist is almost as frustrated as I. This is now my 3rd neurologist (MS specialist). He's mentioned a pain management Dr., but I'm very reluctant to take a narcotic. Can you offer any suggestions?
Neuropathic pain can be very difficult to treat, as you’ve learned. There are several medications you could still try, but you may benefit best from an integrative pain management approach. Just as you found it necessary to search for a good neurologist, you may need to do the same to find a good pain specialist.
Although we always hope to eliminate your type of pain, the main goal is to gain control of the pain. Chronic pain such as you’ve described creates a number of secondary effects that must be managed. These include depression, sleep disruption, daytime fatigue, reconditioning, and altered interpersonal relationships to name just a few. Pharmacological strategies could include the use of mexilitine or intrathecal Ziconitide, a conotoxin approved for neuropathic pain that is infused into your spinal fluid through a pump. You may also benefit from the judicious use of medical marijuana if this is available to you. These pharmacological approaches should be combined with a graduated exercise program, yoga, mindfulness training and counseling as needed. I agree with staying away from narcotics.
I hope these thoughts help.
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego