It’s an odd thing I sometimes consider. (Trust me, I’m not crazy) – but once or twice a year I wonder, what if the neurologists are wrong? What if my wife doesn’t have Multiple Sclerosis? What if she has something that looks like MS but isn’t as bad?
I know it’s wishful thinking. And I know why I wonder. I so want her MS to be something else – something that has a cure. Something that isn’t “progressive” (and isn’t that such a sadly ironic word for a disease).
When I first start to wonder, I find it easy to feel hopeful. MS is one of those odd diseases that seems to take forever to diagnose. It took a lot of visits to doctors and a lot of tests to get a firm diagnosis. The diagnostic process sets one up for doubt.
On the other hand, take a normal health problem.
If you break a bone, you usually remember exactly how it happened. You go to the ER and the doctor looks at your arm and says, “looks like you’ve broken your arm.” Or maybe the diagnosis requires an X-ray. The doctor pops it on the light board, looks at it and says, “yep, look here, you’ve broken your arm, here’s a cast, you’ll heal just fine.”
MS is so unlike that.
When we were told the diagnosis, I told the doctor, “I don’t think that’s it. What else could it be?”
It was a desperate question. “What else could it be?” At the time, I was aware of only one person who had MS. He had been in a wheelchair for years.
Even now, ten years later, I still find myself asking, what else could it be? And after a decade of asking, I see the symptoms, I re-read the lab reports, and I know the truth. It’s MS.
I’ve not talked to anyone about this wishful thinking because it seems irrational. I have a logical mind. I have the evidence and it’s conclusive. Yet some part of me hangs on to the impossible chance that after a visit to her neurologist, the doctor will report with a smile, “Wait, we’ve been wrong! It’s not MS! It’s disease X, Y or Z and it has a cure!”
In case you’ve wondered – and I imagine there are MS caregivers who find themselves wondering as I occasionally do – I’ll share a link to an article on diagnosing Multiple Sclerosis and how other diseases are ruled out through something called differential diagnosis. It serves as a useful anchor to medical reality for me.
Accessing the article requires that you register for a free subscription to the online “Journal of Neurology, Neurosurgery & Psychiatry with Practical Neurology“. You will be prompted to login or register. The article is “MAKING THE DIAGNOSIS OF MULTIPLE SCLEROSIS” by Dr. J. Palace.
When you find yourself wondering about the diagnosis, you have a few options:
1) You can ignore the wondering. However, if you do, it will always be there in the back of your mind. It’s better to address it.
2) You can always talk with the doctor and ask her or him to walk you through the diagnostic information again.
3) And finally, if you already have the irrefutable evidence and just wonder as I occasionally do, call it what it is: wishful thinking. Everyone is entitled to a little wishful thinking every once in a while.
However, avoid letting your wishful thinking distract you from reality. Reality is where you must live, move and have your being. MS is what it is. You’re a caregiver, so take good care.
(As an aside, if you’re interested in reading about research into MS, the free subscription to the online “Journal of Neurology, Neurosurgery & Psychiatry with Practical Neurology” is a great deal. The journal articles and study results are excellent.)
I also sometimes wonder if there are conditions that mimic MS… I grew up in a small town with a chemical plant as it’s only industry. When my mother was in her early 40’s she was diagnosed with MS. Soon after, a friend from high school’s mom was also diagnosed.(same age) They lived 1/4 mile away. I graduated and a few years later and met a woman that lived a half mile away from me, her dad has it. Then I ran into a girl my age (now 41) that I had gone to school with… She has it. That makes 4 people within a 1 mile radius. When we moved across town, I, myself was diagnosed with the disease! And a few years later, it hit our next door neighbor. That totals at 6 people that grew up in the same area all within a mile of eachother……
The thing is, regardless of whether it is actually MS, as in my husband’s case of ‘progressive MS’, you are still left to deal with the constellation of symptoms that are manifest. In his case, the lesions are primarily in his cerebellum, so it is his balance and mobility that have grown increasingly impaired. His chronic pain only further magnifies his disability. Pain is not well understood and not a usual MS symptom. So we continue searching for significant relief nine years after his initial diagnosis. As his primary caregiver to this point, I have gone in and out of denial or more accurately utter disbelief that this is where our lives have led. :( I have started flirting with feelings of brokenness more often, not exactly burnout, more just wornout!
I think it’s normal to want your significant other to have something you can manage. My husband found out just after we got engaged. We have now been married almost two years and have a 5 month old. Personally it was hard to see him go through depression so early on and during my pregnancy. I would often be left to myself and felt so lonely. I wish I would have known about this blog earlier. I married my husband for the great father he’s become and the person I felt I could go to for everything. Slowly I see MS changing the strong willed person he used to be. Those are the days I wish it was something else. I think I’m strong enough for us to survive this, but there are days I’m not so sure.