MS Awareness Month: My Diagnosis Story
After I was diagnosed with MS in 1989, I tried to remember incidents that would have given me an indication that MS was going to be part of my life. My first hint was when my knee was mysteriously and suddenly numb, detailed in a post called My Introduction to MS . But the on and off numbness stopped after a short time and did not return.
I had a personal journal, and wrote in it about my day. I had entries about my right-hand, the one with which we right-handers use to write, hold and reach. I kept saying, “I don’t know what is wrong with my hand.” My fingers didn’t seem to have the strength they once had, and I kept dropping things. Eventually, I could not even pick up a pen. I would place it in my right hand with my left. I would often drop my pen, even in the middle of writing a word.
When I talked to my doctor and we explored possible reasons, we focused on the fact that my job included a lot of computer work. I was scheduled for a carpal tunnel test. The results were not positive, but they were close enough that my doctor suggested I wear a brace on my right hand as I typed. It was months before I put the brace away for good.
We were working on a major software design project at work, and at the end of the day I had to read pages of work produced by each member of my team. The programmers on the team tended to print using very small - very small - font. One day, toward the end of the project, I awoke with double vision. My doctor’s visit was scheduled the day my team completed the project. The doctor told me to quit reading so many pages of small print and gave a patch. It actually worked. There was a time I danced and walked considerable distances for my fun. Then around 1979, I fell and broke some bones in my foot. At that time I thought my fall was just a coincidence. It wasn’t until later that I began to relate my leg and balance problems and the occasional falls. An online friend, Shirl the Girl, wrote about hesitating to wear some sassy shoes and I responded in this post . I had read about post-polio syndrome and looked for someone who specialized in it to see if that might be my problem. I found a physical therapist, but she cut our session short and called her co-worker to take her place. After our session, she made an appointment for me with the director of MS research at Southwest Texas Medical Center (STMC), a section of University of Texas Southwest (UTSW). By the time I went for tests at STMC, for the first time I had a strong feeling it might be MS. There, over several weeks, I ran through a ton of tests – they were researchers, after all. I do not remember all of the tests, but they eliminated Lupus, Lyme disease, Parkinson’s and other similar MS look-a-likes. There were tests for balance, touch sensitivity, prick or dull, vision, spinal tap, urine time/volume, and more. Finally, I had an MRI. That was late in the 1980s, shortly after Dr. W. Ian McDonald published his MS Criteria emphasizing the use and importance of the MRI for diagnosing MS. At that time, MRIs were in few locations. I was sent to a separate medical building that was dedicated solely to the MRI. I was positioned on the bed, slid into the huge machine until it surrounded me, and the banging started. I closed my eyes, and tears began streaming down my face. I lay quietly and calm, but I was not comfortable. I could not dry my tears.
By the time I returned for my MRI results, I had a pretty good idea what the doctor would say. He told me I officially had “Probable MS,” and that he had little doubt in his mind the MS was definite. The time from my first symptom to the MS diagnosis was seven years. During this entire time, and even before, I had been experiencing sporadic problems with my legs, balance, hands, vision, and more. I later learned diagnosis in the 1980s normally took between six and eight years, and sometimes longer.
Initially, I felt relief because all of my temporary symptoms finally had a name. Facing the unknown is more frightening than facing MS. I knew I had a lot to learn, and I was especially grateful my two sons were in high school, old enough to understand. During my search for an answer to my symptoms, I never thought of MS. I did not even know about it. After I learned I have MS, I began to learn about it. It was not so easy twenty years ago. Now the Internet provides information of all kinds, including that written by others going through the same or similar experience. When diagnosed, I went through grief stages. My denial was that I did not think it would change my life as much or as quickly as it did. I was more frustrated than angry. I bargained with myself: “I’ll rest more tomorrow if I get through today.” I was sad for things that will never be, but my acceptance brought an inner peace and helped me make new pathways. Some of these feelings revisit now and again.
Understanding is the first step to acceptance, which leads to inner peace and hope.
Notes and Links:
At the end of 2008 before I was writing for this site, Merely Me, a writer for MS Health Central published a series of interviews and asked me to join her other subjects. I had met Merely Me online before in her personal blog and I knew Diane’s blog. I also knew Lisa’s blog, by another HealthCentral writer. I thought this would be good company, so of course, I accepted Merely Me’s invitation.
Merely Me’s Interview with me
Merely Me’s Interview with Diane J. Sandiford
I often search the Internet for interesting and fun things. When I was thinking about falling (???) I found a campaign in the UK for MS Awareness that features a picture of women’s sexy legs and reminds the world that MSers are people, too. Click the “MS Party Girls” and read their personal stories.
Early last century, doctors did not know to test for neurological damage or MS. I think My Grandmother Ola was unidentified as an MSer.