In my last blog describing my journey fighting metastatic melanoma, I shared my first experience with cardiovascular disease after being diagnosed with Stage IV melanoma. Little did I know that would be easy compared to what was coming next!
During the month following stents in the “widowmaker” cardiovascular artery, I began to notice that I was getting more clumsy than usual. One morning coming to work, I stumbled and fell in the parking garage. All it really did was make me mad and I picked myself up, stopped at the first restroom inside, cleaned up and went on to the office. While I worked a long day and did not notice anything that got in my way, I did notice that it seemed a little more difficult to pick up my left foot (and leg) as I walked.
About a week later I was coming down with one of those miserable summer colds, and I made an appointment with my primary care physician. I told him about my perceived clumsiness and also the fact that my back seemed to hurt more than usual. He did a brief neurological exam.
***When he asked me to lift my left leg, it didn’t move very much. Then I could not flex up my left foot on command. He recommended a consult with a neurologist and his nurse made an appointment for about four weeks later.***
I kept having more stumbles and a couple of fairly hard falls especially when I wasn’t paying attention to where I was going. The problem with lifting my leg got worse and I began to feel more weakness in my extremities, particularly the left side. Then one morning, I awoke and had trouble getting dressed to go to work. When I got to work, it was early, so I went to the physician’s lounge for coffee and a little breakfast. I was hoping that this would help me shake off whatever it was that was messing with me that morning. While there it became obvious that I could hardly lift my left arm and could not flex my left wrist at all. My hand just sort of stayed limp. One of the hospitalists was sitting nearby and I asked him his opinion. His opinion was that we should get me to the ED as quickly as possible because he thought I might be having a stroke. Now that woke me up!
***By the time I got to the ED I could not walk because my left leg would not support me. Because of my relatively fresh diagnosis of Stage IV melanoma, I was immediately sent for a MRI of the brain since it would show more than a CT scan.***
So back and forth I went for the scan and during that time I had developed a twitch in my face. I was admitted to the hospital. I was really stressed out.
More tests were done including MRIs of the spine, EMGs, evoked potentials, a spinal tap and dozens and dozens of lab tests. The physical exam showed that I had very little sensation in my left extremities and little if any reflexes.
***At first, the neurologist was suspicious of a metastasis to the spine or spinal fluid. One MRI showed what he thought was a possible inflammation of the spine.***
There were also many signs of degenerative spine disease and a couple of places where nerve impingement could be causing right sided symptoms. But, of course, the symptoms were much more pronounced on the left side. Other tests pointed to a central nervous system problem. The spinal tap showed some white cells along with an elevated protein level. After all was said and done, the diagnosis of transverse myelitis was made.
Transverse myelitis is a rare inflammatory disease causing injury to the spinal cord with varying degrees of weakness, sensory alterations, and autonomic dysfunction (the part of the nervous system than controls involuntary activity, such as the heart, breathing, the digestive system, and reflexes).
***There are roughly between 1 and 8 new cases per million per year – about a total of 1400 new cases each year. I always said I was one in a million!***
A small percentage of people with transverse myelitis experience recurrent disease especially if there is a predisposing underlying illness.
***Myelitis related to cancer (called a paraneoplastic syndrome) is uncommon. However, there are several reports in the literature of a severe myelitis occurring in association with a malignancy.***
In addition, there are a growing number of reports of cases of myelopathy associated with cancer in which the immune system produces an antibody to fight off the cancer and this cross-reacts with the molecules in the spinal cord neurons.
***This occasion marked the first time that I had heard the phrase “paraneoplatic syndrome”. It would be something that would eventually cause me to fundamentally change how I would live my life.***
The course of treatment included intravenous steroids.
***I was given 1000 mg intravenous methylprednisolone for 5 consecutive days. Such massive doses of steroids are hard for the body to take. It causes insulin deficiency, sleeplessness and a feeling of high anxiety.***
However, it did seem to be helping the weakness. MRIs at the end of this course of treatment and my physical exam showed improvement and I was discharged from the hospital.
***Partial recovery was apparent in the first month after treatment. Intensive outpatient rehabilitation was scheduled and continued for the next three months.***
While moderately disabled, I went back to work part-time, resuming essentially full time duties about 60 days post discharge. By the end of rehabilitation, I was left with continuing left drop foot, some residual left-sided weakness and clear sensory changes in my hands and feet. Even with these on-going disabilities, I felt lucky. I was still able to work and my mind was clear and functioning well. No sign of metastasis was discovered in any of the tests performed in the hospital. And, a post hospital PET scan was also clear.
***I had met another disease challenge and once again I prevailed. I was not happy with the effects but at least nothing showed that I had any life threatening disease – at least not now.***
More information on transverse myelitis can be found on the website of The Transverse Myelitis Association at www.myelitis.org. If you have interest or are suffering from symptoms that might suggest the disease or if you have been diagnosed with the disease, I urge you to go to their site. You will find it worthwhile.