Carmencita S. Mendoza
Cagayan de Oro City, Philippines

I have had transverse myelitis for more than four years now.  My symptoms first started in October 2002 when I awoke to extreme pain in my lower back and right armpit. My husband, Ben, brought me to the doctor who told me it was just ordinary back pain and gave me muscle relaxants and pills to relieve the pain.  Despite the medicine, however, the pain continued and so I went once again to the hospital where I had an executive check-up.  The results yielded nothing serious, but as my pain continued, my doctor scheduled an MRI.  Results from the MRI led my doctor to diagnose me with syringomyelia and I was advised to get an operation immediately.

Since my husband and I were reluctant to get an operation because of the risks involved, we flew to Manila (capital city) to get a second opinion from a specialist.  My second MRI led the doctor to diagnose me with possible transverse myelitis and he prescribed steroids to help with pain.

We went to back to Cagayan de Oro where I continued the prednisone and was to be tapered down for two weeks. The steroids seemed to work for a while and I was starting to feel a lot better.  On January 31, I suddenly found I could barely lift my left leg. The following day, I found that both my legs were paralyzed and Ben rushed me to the hospital where we had more tests done.  I was given additional steroids, but this time they didn’t seem to work.  We made the decision to once again seek help in Manila.

By that time I couldn’t walk at all.  I had to be airlifted to the Makati Medical Center Hospital where no less than eight specialists took on my case.  The weeks I spent in Manila were filled with taking all kinds of tests imaginable. They did a spinal tap, another MRI, blood tests, urine analysis, and many other tests.  My doctors also assigned me to begin physical therapy while I was there.  

For weeks, we waited for a diagnosis.  But the doctors were stumped.  Apparently, they had never treated a case quite like mine and couldn’t decide among themselves if what I had was multiple sclerosis or transverse myelitis.  I stayed about a month in Manila and had to take a leave of absence from my work as an accountant in the Coca-Cola Bottler’s Plant in our city.  Since the tests continued to yield inconclusive results, my husband and I returned home the last week of February 2003 to Cagayan de Oro where I continued my physical therapy. After about two weeks of constant physical therapy at home, I was slowly able to regain the use of my legs. My back pain continued, but at least I could slowly walk again. Since it seemed to be working, my husband and I continued my physical therapy sessions from home coupled with some homeopathy.

On April 2003, I awoke to find that I was unable to move my left leg. I had also contracted a fever and a severe headache and had to be admitted to the hospital. There, I discovered that my paralysis had spread, preventing any movement from the neck down. Once again, I was airlifted to Manila where the doctors, after giving me another MRI scan, confirmed their final diagnosis: I had transverse myelitis.

After the diagnosis, I remained bedridden for almost a year. Treatment for TM, which is virtually unheard of in my country, was difficult. Oftentimes, the doctors were uncertain on how to proceed.  Because of this, Ben and I decided to apply for visas to the United States where my niece was living.  She found out that it was possible to arrange for an evaluation and consultation at the Johns Hopkins Medicine International.  Unfortunately, at our interview in the U.S. embassy in December 2003, both of us were denied our visas. The consul refused to cite specific reasons for our denial, simply stating that we were not qualified for approval.  Perhaps they feared we would not have enough money to finance our stay in the United States despite affidavits of support and other finances from my sister who works in the US as a Registered Nurse.  Whatever the reason, we were not given our visas.  So, in April 2004, Ben and I opted to return to our home in Cagayan de Oro where I could at least be with our four children.
 
Eventually, with continued physical therapy, determination, and with G-d’s grace, I was able to slowly walk again.  After a while, I regained more control of my bladder and bowel movements and managed to stay at home by myself while my husband returned to work.
 
Today, more than four years since my ordeal began, my back pain still continues, and I sometimes have spasms of pain which last for a while.  My bowel movement and urination remain impaired.  I continue my medication (Neurontin, several vitamins and Methotrexate 3 (2.5mg) tabs a week and ¼ rivotril, as needed).  I find that stress increases my pain and I try to avoid this as much as possible.

I am semi-retired, having resigned from my post as accountant at my previous office.  I have learned, to a certain extent, to keep peace with my illness which has taken a lot from me, but which has also, thankfully, left me with so much still.  I find that with a lot of determination and the willingness to not focus so much on the pain, which comes and goes, life is still good.  And while there are many things I would like to change about my condition, I am incredibly thankful to the people who surround me, my husband, Ben, in particular, who has always supported me and continues to support me in this.