Creepy MS

We’re heading into the fall season and thoughts turn to the creepy, crawling paranormal things that startle even the strongest and bravest of us at Halloween, especially when they appear from nowhere. For some of us, the experience of creepy crawling things isn’t limited to the trick-or-treat season – paresthesia and fasciculation of all shapes and sizes are just some of the annoying and often alarming creepy symptoms that can happen to people with MS.

Creepy and weird MS symptoms

That electric feeling

Fasciculation is one of those things that make me think of Dr. Frankenstein throwing the switch and electrifying the body – they are the involuntary movement and contractions of muscle fibers, caused almost always by neurological disorders. Basically, it means there is a short in the wiring in our bodies and it can cause lots of strange twitching, sometimes painful and sometimes not. The most visible fasciculation I have had was a spot on my left leg that would undulate as if there was a nest of worms under it wiggling about. Fortunately this fasciculation didn’t hurt, it would mainly be annoying. But it was visible and my husband was often subjected to me exclaiming - look at this going on! - what has crawled under my skin and is breeding? It’s frightening to think maybe some parasite had moved into my body, but not more scary than realizing it’s “just”  my multiple sclerosis making its presence known.

Burning and tingling

Then there are the paresthesia – where we feel burning, tingling, numbness or any of a number of other symptoms that are not visible to anyone. These are caused by errant signals to the nerves, and can be caused by a number of different problems such as diabetes or a B-12 deficiency. But they are also a common problem with multiple sclerosis. Paresthesia can be associated with discomfort or pain. The strangest ones I have experienced were the thousands of needles in my scalp, just on the right side of my skull - it didn’t hurt unless I touched my head. Combing my hair was an ordeal thanks to the pain; just touching my scalp in certain places set it off. My neurologist searched the literature and found no mention of this specific complaint, but treated me for a relapse and a mega-dose of IV solumedrol made this form of needle torture stop.


Most everyone gets a prickling, burning or numb sensation at some time or another in their body, but those are usually transient, meaning they don’t last. Those of us with MS tend to have them more frequently, and they might not go away, or at least not quickly.

And everything else

There can also some sensations that just go unexplained and most of us learn ways to just live with them, assuming they are another one of the tricks of MS. For about a year – around the time of my diagnosis and before I began my MS disease modifying therapy – I had an area on my right forearm that was particularly affected by any air movement across the skin surface. When I walked I couldn’t swing my arm because it created the air flow that set off this sensation; the area on my arm would feel icy cold but was also just on the borderline of being painful.

I wonder what strange feelings inhabit your body and how you cope with them – I hope you will share your stories about living with paresthesia and fasciculations and how they create our own creepy tales of how our bodies and MS create its own fright night experience.

Wishing you well,


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