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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.

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.

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.

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,


This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • deadbrainwalking
    4 years ago

    Cheyenne: You’re experiencing allodynia, which is sensitivity, discomfort and/or pain caused by non-noxious stimuli. So, even though your clothes shouldn’t hurt, they do. Your solution of cooling the clothes before wearing is quite novel! Sometimes when we have odd phantom sensation, like tingling or pins and needles, applying a physical stimuli helps because it’s a confused signal that originates in the brain and central nervous system, so applying an actual stimuli sends real signals to the brain.
    For those of you who are experiencing odd symptoms that you want to research but are unable to put a name to, the Nat’l MS Society has a pretty comprehensive list of possible MS symptoms. They also have a fantastic database of medications that can help to ease some of these symptoms. I started taking medications that are strictly palliative, but it’s such a great relief to not be constantly bombarded by bizarre sensations. Itching, tingling, burning, pins and needles, feeling like I’m walking on shards of glass… I still have breakthrough symptoms, but overall I’d definitely choose taking a few more medications over experiencing these symptoms on a regular basis.
    So, show of hands, who here has felt a tingle or tickle and didn’t investigate it because such sensations are commonplace, but then after some time you discover that you actually had a spider or other creepy crawly climbing around all over you. *raises hand* Hah!

  • Laura Kolaczkowski author
    4 years ago

    Autocorrect strikes again! Thanks for sharing your perspective and the information about allodynia. The NMSS website is a great resource for information. Yes, my hand had to go up with the question about real vs sensory.

  • deadbrainwalking
    4 years ago

    Dang it. My phone auto corrected,but the beginning of my post was meant for Cherylanne, not Cheyenne. Hehe Sorry about that.

  • marie
    4 years ago

    Thanks for sharing this. Sometimes I feel alone and unable to describe these things tI someone that doesn’t know. For the last few years my right leg constantly tingles, I’ve learned to live with this so called new normal. The things that kill me are the shooting lighting bolts that go through my feet and my hands periodically throughout the day. I’m trying to get used to that. The other thing is my bad leg, the right one, gets really stiff & feels like it’s shortening. Anyone else experience that? I’d lover to know what you do for it if anyone does. Take care ya’ll.

  • suej1962
    4 years ago

    Im starting to lose my battle with my MS…more than half my body is numb…dont know what im gonna do…cant work and have no money to survive…we’ll see how this works itself out. Its almost time to go through my shit list.

  • oklight
    4 years ago

    i hear you im in the same boat that you are.? where you at in our “Great nation”?

  • BethAnn1999
    4 years ago

    I get really odd pain, over the last 3 months I have been to the dentist and they could find no reason for the pain I was having. Next I went to my regular doctor for pain in my right forearm. She could find no cause. Both of those “pain” areas have resolved, but just 3 days ago I started having pain in my right leg. I’m starting to feel like a hyperchondriac but the pain is real!

  • Art59
    4 years ago

    I always get what I can only explain as nervous muscle.It feels like it’s twitching but there is no visible movement. It’s not painful but it is annoying to the point where I have to keep moving around either walking or moving my arm and shoulder. The problem is if I’ve had a few bad nights or an exhaustive day I don’t have the energy to keep moving. I was taking baclofen but my ins co. sent a letter to my Dr. warning me off of it. I now take mirapex which seems to manage it. What is strange is that without fail, the change of seasons make it worse for a month or two.(summer to fall,winter to spring) I also get the sensation of something crawling up my leg or arm but not as often.I have found that both of these sensations increase when I’ve not gotten enough rest.

  • JulesPMH
    4 years ago

    Could this be restless leg syndrome or something similar? I would imagine MS patients would be more probe due to so many signals getting crossed. I have RLS (it’s a misnomer – it’s NOT limited to the legs) and it tends to be worse the more fatigued I am, which of course is when I have the least tolerance for the symptoms. What most people don’t know is that many medications can cause or exacerbate the symptoms, especially things like cold/allergy medications. I wondered whether you might be taking those in spring or fall when allergy season is at its height that could be causing an increase in symptoms. It might be something completely different, but it couldn’t hurt to check out, if you haven’t already. Good luck to you!

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