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.)