Thirty years ago, today, I was diagnosed with Multiple Sclerosis. In the previous November I was in Queens Square London getting a battery of test done. This included an MRI (Magnetic Resonance Imaging) and a lumbar puncture (LP). The MRI was a new diagnosis test at the time, as they had just started to use gadolinium as a contrasting agent to see active MS lesions. I was a part of a research study, but all I could think of during the diagnosis phase was the pain associated with the LP. Every time I stood or sat up, the pain in my head was intense. It felt like my head was being crushed, I can still remember the pain.
It was 2.5 months later that I visited my neurologist in his office to find out why I had been getting all these strange symptoms. Tingles, numbness which reached from my toes to my chest, and a right leg which would get so heavy, I could only drag it behind me. I had no idea what I was going to be told, but I thought I might have a slipped disk. The doctor sat me down and mentioned oligoclonal banding in my CSF (Central Spinal Fluid), altered neurological tests and lesions on my spinal cord. He said, given my symptoms, and the test results;
I had Multiple Sclerosis.
These were words I had never heard before. I asked was there anything I could do and he said “Nothing, just keep doing what you are doing”. He did mention I could start taking Evening Primrose Oil, which contains gamma linolenic acid (GLA) as GLA is one of the building blocks for the myelin sheath which covers our nerves. Other than this I have very little memory of anything else said at that appointment. I went home in a daze.
When I got home, I checked my encyclopedia (in those days there was no Internet or Google) to read a very brief description of the disease. My next task was to phone home to my parents in Ireland. It was a quick call, as they were expensive, and then I headed into work.
Looking back I now realise how bleak things were at then. I could be diagnosed, but there was no treatment, and the prospects were I would be in a wheelchair, unable to do anything. Now, newly diagnosed have a much better prospect with many disease modifying drugs available and the disease is understood much better. Exercise and diet can help slow progression and last week we learned the Epstein-Barr Virus could be responsible for many of us getting this horrific illness. Things have really progressed.
Now I have Secondary Progressive MS, my disability is gradually getting worse. Mobility worsens and then I find some solution like Functional Electrical Stimulation, IV steroids, or cannabis, which reverses some of the decline. But my disability is still getting worse.
I have found something which I can do which will help future patients. Advocacy has become my purpose. Getting a chance to influence research, how it is conducted, and I am now actively trying to improve how medicine is taught, getting patients to be an active part of the curriculum. Tomorrow I will be giving a Keynote talk at the Patients as Partners – Europe conference. These opportunities have allowed me to turn an ugly beast of a disease, into a glowing purpose, bringing a shining light into the lives of other people living with MS.
So much has changed!!
What was your diagnosis like? How do you see your life now? Let me know in the comments.