I have been writing about that big day. August 23rd, 2013. The day that I got the preliminary diagnosis for Multiple Sclerosis. Not an easy day. I found myself reflecting on it at various points over the last couple of days which is natural, even in the wake of some truly amazing news. A day that sticks in the memory.
Foreboding
I remember feeling bad that morning. Anxious. There had been two weeks of tests following an urgent referral from my doctor. It turned out that he had been worried I had had a stroke but let’s leave that. We went to the local hospital and went to see the neurologist. I was short-tempered that morning. Perhaps a sense of foreboding… cure the dramatic music.
The neurologist first went through the list of eliminated causes for recent fatigue, dizzy spells and numbness. It made for a grim list and I was glad these had been eliminated. Stroke, Motor Nurone Disease. Some others that I was too stunned to remember. The only condition that had not been eliminated, and which all the various test results pointed to, was MS. Multiple Sclerosis.
Next Steps
The neurologist then proceeded to outline the next steps. He scheduled a Lumbar Puncture, or Spinal Tap. It was in the middle of a long planned holiday to the East Coast of America. He did not seem to really factor that in, which is fair enough, but we, my partner and I, did! We asked for an hour to think whether we needed to cancel our trip or not. The Neurologist agreed and, as we left, shook my hand and said ‘Sterkte’ which, translated from Dutch to English, means something like ‘Courage’.
It is something you often say to someone at a funeral when they have lost someone they love. Not quite what you want to hear…
Decisions
At that point I knew nothing about MS. Nothing. It scared me, of course it did. I thought only of disability, life getting smaller. My partner had the same fears. We went to a nearby forest, sat on a log and talked. A green field in front of us under a warming, comforting sun. Of course, we were both lost and could not decide what to do. We needed to know whether or not MS was definite, of course! But that holiday! How we had been looking forward to it!
We would cancel the holiday and I would have the Lumbar Puncture! An expensive decision! But right!
Cooler Heads
Luckily the receptionist in the Neurological Department had the cooler head that comes with perspective. She had MS as well. Lesson one, people with MS do things. Lesson two, listen to those who know. It would make no difference if the Lumbar Puncture was two weeks later than planned. If MS was there it would not be going anywhere. If it wasn’t it didn’t matter. We went on that trip and had a mixed time to be honest. Boston was wet and miserable as was Vermont. But Cape Cod was just what was needed. And to finish the trip in New York was perfect!
As for the rest of the day itself? Well, guess what? I rode a bike! I did not think I would be able to do that for long. Calls to family and calls to work where, amazingly, another colleague in a team of three had also been diagnosed with MS. It was some kind of remote dream. Hearing the upset of others hit home. I had just been diagnosed with something life-changing.
The day came to an end on a high. Dinner with generous friends who were generous with wine. And support. A gentle reminder that, for now, life had not come to an end.
Start of the Journey
The Lumbar Puncture came back as confirmation of MS. This, however, was just the start of the journey of MS Diagnosis. Then came a year of indecision. The neurologist wrote to his professor at an Amsterdam Hospital, the VU, about what an interesting case I was. I was thrilled to be interesting for once. We eventually saw another neurologist on Christmas Eve, 2013. There followed more tests before a return appointment where… she was not able to state for definite that it was MS. Although it did, and these were her words, ‘Smell like MS’. For some reason Nirvana came in to my mind…
Eventually a change of Neurologist led to the diagnosis. Primary Progressive which was apparently the worst form with no respite. I benefitted, though, from modern knowledge and amazing support via the Dutch Medical System, my employer and everyone around me. Life did not stop and I was encouraged to stay active and healthy. Twelve years on, I am still not disabled, just a little inhibited although increasingly so.
Reflecting on Emotion
Writing this all down it is strange to reflect on just how much I feared what was happening and that fear came from simply not knowing the condition that I now had. The challenge is that MS is an incredibly inconsistent condition and no two patients experience the same symptoms. I may have the worst form of MS but my experience over the years has been positive. Back then, though, I did not know that the subsequent years would be so good, so positive, so enriching. I just thought of the inevitability of a smaller world as my capabilities got less. They are, of course, but it has taken a long time. In the midst of the darker times, I am so grateful for that.