I felt a surge of anger, sadness, and frustration as she said this to me…


The circumstances of any health condition could give rise to the situation described below. In hindsight, I wish I had asked some more general questions and followed up, but I am also terrified and dismayed by the failure of the medical professionals to ask the question I was not asking.

Spasticity is an important symptom of multiple sclerosis. Based on my latest conversation with a medical professional about this subject, my working understanding of spasticity now includes what has been going on in my weak left leg for the last decade. Prior to my recent appointment, it had not included my weak left leg, the source of many of my biggest challenges, frustrations, and sadness relating to multiple sclerosis. Notwithstanding all the images of frozen limbs I looked at for this post, prior to my recent appointment, when I thought of spasticity, I thought of other people experiencing painful cramping and involuntarily jerking of limbs and other body parts.

And yes, my own legs do jerk in the morning and I did know that that is something like spasticity, but I wouldn’t come to the conclusion that I actually “HAD spasticity” or give a YES when asked the question by one of my doctors whether I “was experiencing spasticity.” I would never have sought treatment through drugs, for example, for the morning jumping of my legs. Spasticity didn’t keep me up at night. Spasticity didn’t hurt me. Spasticity didn’t seem to be a big deal. It didn’t seem to affect my difficulty walking.

Fast forward to my recent appointment. I went to see a physical therapist who is also a specialist in multiple sclerosis. I went to see her because my left knee is having some issues, which although they haven’t presented yet in pain are presenting an alarming locking backwards of the knee and troubling stiffness around the knee after it is challenged by, for example, walking up the hill for a while. It is important here to mention that I took the initiative to make this appointment totally on my own, not because my neurologist had directed me to do it or asked questions that would’ve drawn out the need to do it.

Through the last 10 years there have been other moments like this one where I did not make appointments with physical therapists because of my schedule, travel, or other interfering factors. But on this day, I did go to see her. I also went to see her with a much more generalized question about my left leg than I have ever presented to a physical therapist before, even though most of my conversations with physical therapist have had to do with specific issues relating to my left leg. Does that difference in presentation to physical therapists sound like legal hairsplitting to anyone? Does it sound like the old maxim that you only get answers to the questions you actually ask? At this point it does to me!

I had met with this physical therapist before to discuss a custom ankle foot orthotic. This time, with a more generalized presentation, she took the time to examine my knee and quickly came away with the conclusion that my inability to use my left hamstring was not weakness per se but in fact spasticity inside the muscles of the leg that were refusing to budge any higher. She confirmed this by having me sit down facing forward and doing some tests on involuntary shaking of the left foot. She said that what I was experiencing was spasticity in my left leg and that I am I could very likely be helped by some of the drugs that are taken to lessen the effects of spasticity.

I felt a surge of anger, sadness, and frustration as she said this to me. It was overwhelming. How could I have missed this for so long? How could I have gone without medication that might indeed help me a lot with one of my biggest problems which is my left leg? Did this mean that I was headed for the more serious and painful type of spasticity? On the last point, she reassured me, stating that a diagnosis of spasticity does not necessarily translate into a sentence of greater specificity. I was comforted but still pretty angry at myself and frankly at my neurologists and at her and my other physical therapists who had worked on my left leg.

For the record I adore my neurologists and think they are some of the best angels in the outfield helping those of us living with multiple sclerosis. For the record, I think my physical therapists have been highly competent and they have asked all the specific questions that I presented to them. For the record, I’m relatively fond of myself though I do think that I miss things through being too much in my own experience and worried about whatever problem is coming up next without taking the time to widen the frame and look at what is going on in the disease for other people.

That said, if anyone has the ability to widen their frame relating to the disease, you would think someone like me, who is writing a blog about his life with MS, who is an active participant with the national multiple sclerosis society, and who reads about and speaks about issues related to MS, would be someone who might be able to make the connection between the general concept of the word “spasticity” and the chronic devastating weakness of his own left leg. But like I said at the beginning, this could happen to anybody. From now on, I am going to ask general questions about what might be causing everything happening to me and see if there is anything else that might help. And I am going to be very hopeful about Baclofen, the drug my neurologist prescribed. If it helps at all, it will be very sweet, far more sweet than the bitter, the very bitter, of what might have been over the last many years.

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