MS Patient, Ph.D.: Setting the Right Expectations for Recovery
This means finding a careful balance between hope and information
I had been at the hospital for a few days when I was given a diagnosis and treatment for the symptoms of MS (which I wrote about in my first blog post), so I figured that being discharged would have meant that I was back to normal.
That was a bit too optimistic, but I had reasons to be hopeful. Once at home, I sat on the couch catching up on all the shows I had missed while in the hospital and started to feel the rug beneath my feet. This was exciting! For days the tingling and numbness in my feet had provided a weird buffer between the world and me. Now, I actually could feel the soft twists of the carpet or the cold kitchen floor underneath my feet. It had taken 5 days for the tingling to spread to my toes and hands, so I reasoned that it might only take 5 days for the weird sensations to go away.
In fact, the tingling got worse before it got better. It would take at least another month after that for the tingling to taper off enough that it wasn’t distracting when I would try to focus on any other task. Such slow progress could have been incredibly frustrating. However, I wasn't completely taken aback by this length of time, thanks to one particular conversation that proved to be the most useful in terms of giving me a realistic timeframe for my recovery.
Harold (not his real name) is a colleague’s husband who visited on the last morning of my 6-day hospital stay after being diagnosed with MS. My boss had repeatedly suggested over the previous few days that I consult with Harold, a neurologist who also has a research lab, to get a second opinion about my new diagnosis. Harold was the only one to give me any indication that recovery would not be immediate.
Harold had walked into my room after having briefly gone through my chart and reached the same conclusion that my neurology team had 4 days prior. “I agree that you have MS,” he said, but what followed was different from anything I had heard thus far. “The tingling that you are experiencing will probably go away in the next 2-3 weeks, as the myelin repairs itself. If this is relapsing-remitting [RR] MS, this sucks, but you will have a normal life, you will have kids, etc.”
It took me a few days to accept that it truly would take a few weeks to feel better. As I read more about MS after my diagnosis, I realized that it could take longer for my myelin to regenerate (if at all) and for me to feel normal again. But, I was finally able to stop feeling guilty about taking the time to allow myself to heal.
My visit with Harold was maybe a total of 10 minutes long, but what he chose to say about having MS was more detailed and immediately applicable than anything my other doctors had said and put many things into a healthy perspective. I had just spent the past day crying on my husband’s shoulders, imagining all the things in my life that I believed were going to be so drastically different. Now that I had MS, I was ready to move into a single-story ranch for our first home, in case I wouldn’t be able to climb up stairs or if I were to become confined to a wheelchair. I was asking myself, how would I keep up with the children that we always dreamed of having?
Happily, a year and a half later, the tingling sensation is mainly gone and only returns at a low level if I’m overly tired or overheated. The reality is that MS is an unpredictable disease, and time to recovery is different for everyone. But being told that it could take weeks to feel normal and that with the therapies available today people with RRMS live fairly normal lives for many years and decades was infinitely more helpful than not being told anything at all about what to expect.
So my take-home message for clinicians would be to strike a balance between hope and data. Explain to patients that not all people with MS will recover completely, but set the right expectations for the amount of time to recovery for those that do.