Never felt sorry for myself
I’m a 52 year old male and have been an RN for 28 years and I work at Vanderbilt Medical Center in Nashville.
On a late March 2011 morning, I awakened with severe low back and hip pain. The pain persisted but I figured it might be Arthritis. It continued on and I went to my primary physician a few weeks later. I had labs drawn and the results suggested a possibility of an autoimmune disease, perhaps Lupus, so that prompted Dr. Holmes to send me to a Rheumatologist. He took one look at my labs, assessed me and then referred me to the Multiple Sclerosis Clinic at Vanderbilt Medical Center.
By the time I could get an appointment to the MS Clinic we were well into July. In August 2011, I had Evoked Potential Testing of my brainstem, somatosensory (legs and arms) and visual. The somatosensory testing showed a severe conduct defect of my lower extremities, originating from the cauda equina of the lumbar region. I also had a lumbar puncture that showed increased protein levels but didn’t reveal oligoclonal bands that would suggest MS. I could not get an MRI because of reasons I will explain.
The diagnosis was Transverse Myelitis. TM is a rare neurologic condition that is an inflammation across the spine of the involving a demyelination process. By this time, I continued to experience the back and hip pain, stumbling on occasion, difficulty with word finding, neuropathy and severe spasticity of my legs incessantly. Over Labor Day weekend of 2011, I was in Dallas visiting friends when I awakened to crushing chest pain and temporary paralysis of my legs. Eventually those symptoms gradually resolved during the day.
When I returned to Nashville, I contacted my neurologist and he ordered 5 days of 1000mg of Solumedrol IV. I stayed pretty much status quo until March of 2012 when I awakened with blurred and double vision that lasted more than 24 hours. I was afraid, I couldn’t even see to use my cell phone to call or text anyone. That evening, I had a friend take me to the ER. The ER doctor contacted my neurologist and the order was to start on my 2nd round of high dose solumedrol. The steroids helped significantly, but after that relapse my hip pain and spasticity worsened appreciably.
On June 1st I was scheduled for another round of the somatasensory and visual testing. The somatosensory test revealed significant blockage in nerve conduction defect in my lower extremities. Of even more importance, the VEP (Visual Evoked Potential) exposed a conduct defect of my right optic nerve consistent with being a chiasmal lesion.
June 8th 2012 was my follow-up appointment with Dr. Pawate at the Vanderbilt Multiple Sclerosis Clinic. Indeed, no surprise to me, the diagnosis was Multiple Sclerosis. My next step was to decide on the options for treatment that Dr. Pawate presented to me. I took the week-end to do my research and then informed him that I would do the daily injections of Copaxone. Giving myself daily injections was not an appealing thought. However, most of the other drugs I was given to choose from had more severe side effects, including liver issues requiring close monitoring of liver enzymes.
When I start to think back, there was a time in my mid 20’s when I had to ambulate with a cane because of severe hip and back pain. The MD’s were thinking ankylosing spondolytis but I never had an official diagnosis and the symptoms started subsiding within months. In 2009 and 2010 I had been having many issues with bladder retention and incomplete emptying. Diagnostic tests over a period of time revealed that my only option for relief would be implantation of a bladder stimulator that works much like a pacemaker does for the heart. Thankfully, the stimulator has helped with my bladder problems. I wasn’t able to get an MRI because of the bladder stimulator.
I have never once thought “why me?” or felt sorry for myself. I talk to others about the fact that I have MS, but I don’t complain. Oh sure, I’ve shed tears on occasion. I live with pain, neuropathy and spasticity every day. I often wake up moaning several times during the night because of it. Some days are better than others. However, I have pushed on and not missed a day of work because of the MS except when I’ve had to have the high dose steroids.
Over the past year I have had an increase of pain and spasticity, sometimes almost unbearable. I have gradually increased my baclofen to 30 mg 4x day, valium, zanafex and Elavil at bedtime. With increases has come relief for a short time. My MS doc has sent me to a neurosurgeon at Vanderbilt and I now have some hope for major relief as I will have a trial and then an implant of a Baclofen pump if all goes well with the trial.