Myoclonus – heightened sensitivity and MS

There are many unpleasant symptoms that are well understood to be associated with multiple sclerosis, like fatigue, cognitive impairment, and spasticity. But there are also symptoms that occur in people with MS that aren’t commonly discussed, and may actually be overlooked by patients and physicians. One of our contributors, Matt, wrote an article about how his “startle reflex” is extremely sensitive, and it actually has a detrimental effect on his quality of life. This symptom, also known as myoclonus, impacts many people with MS, but it appears that many people don’t realize it was actually related to their MS. After reading Matt’s article, “Myoclonus – Why do I startle so easily?”, many of our community members shared their thoughts and experiences with us. Here’s what several of them had to say!

I experience this too!

  • I have this too!!!! Loud noises such as a loud TV or radio. People talking loudly or children screaming. My senses are all affected, including my hearing, eyesight, and smell.
  • So THAT’s what that is!
  • I have this problem too and I get really agitated by it. I’ve always been jumpy, but more so in the past 5 years.
  • I have this too. It’s gotten to where I can’t even be where there are large groups of people, and even the sound of my own voice will rattle me. And I have gotten to where I don’t like to talk or socialize at all because of how much noise bothers me.
  • I am also very sensitive to noise and I have strange sea like sound in my left ear.
  • Thank you Matt for an excellent accounting of your journey with Myoclonus. I too, have had a major relapse and experience a higher sensitivity to certain things, one being sound. My neurologist and I have been working on subduing the worst and working our way down.
  • Klonopin does not work for me. I take Nucynta at night and it helps, but the side effects are very unpleasant. It’s a very strong narcotic for pain. It takes away the “jerky” movement but it makes me incredibly anxious. I have not found anything else to remotely make the myoclonus better. I have high hopes for the future of medicine because I cannot fathom anyone living like this for the rest of their lives.

I didn’t know there was a specific diagnosis for this symptom!

  • I decided to share this as some of my friends might find it interesting. It is part of a long list of very odd symptoms I have acquired, and it was helpful to me when I found that this “weird sensory sensitivity” had a name, myoclonus. Psychologically, for some reason, the fact that there is a name for this condition is validating, and helps, somehow, to know that there are others dealing with this odd affliction that is not easily understood.
  • I’ve always thought my exaggerated startle reflex was related to MS, but this is the first time I’ve seen it in print.
  • I didn’t know what it was going on. It’s even worse in evening with the TV, my husband talking over the TV, the dog barking at the cat, etc. It’s sensory overload!! Now you’ve validated that it’s an MS symptom.
  • Good post Matt, I have same symptoms, but flashes of bright light, sound and other stimuli, including stress, are involved. I had not tried to find out what it was called, but I knew it was brain and spinal lesions behind it – I am glad to hear it has a name.
  • Oh my goodness, this was one of the new symptoms I developed about a year ago! My phone going off would startle me, the door slamming throws me into a panic attack, loud noises especially in the evenings seem so much louder and ear piercing.
  • I have this really bad and the doctor, not my neurologist, always told me it was my Graves’ disease.
  • I am so grateful to read this article. I developed this startle problem in the past 10 years since I was diagnosed with MS. I remember at times I was so startled it was actually painful. I don’t seem to do it as much as I once did, but good to know I wasn’t crazy. Thanks for your article.
  • I can not thank you enough for writing about this because, like many I never connected this with being a symptom of MS and I never told my neurologist that this was a frequent experience of mine.

People don’t understand the impact this has on my life

  • I was never so resentful. I have to keep reminding people who know I have MS to calm down so I can calm down too.
  • If someone raises his voice I begin trembling. I’m young, but old enough to not be comfortable about that observation. It’s getting worse too
.
  • I knew startling was MS, but it’s nice to know that others are affected by people walking behind them. I had someone come around my desk to look at my computer and I got so nervous I had to ask him to move away from me. I felt like a great big “meanie”, but you have to do what you have to do.
  • This particular symptom has affected me tremendously in the social aspect. For many years I could not have been more frightened to be around anybody doing anything because they feared that I would have uncontrollable muscle spasm. The reactions I got were not totally bizarre, however I noticed that it was not just me who was disturbed by my symptoms, yet most people tend to feel very uncomfortable around me because most people think that they are causing me to be scared.

I have something similar

  • For anyone who is experiencing sensitivity to sound, there is another condition called “Hyperacusis” that involves sensitivity to sound without apparent evidence as to the cause. The primary difference between the two, from what I’ve learned, is that it does not (necessarily) involve the muscular activity, but more often results in pain, fatigue, and a multitude of other varied cognitive symptoms. There are a few subcategories of hyperacusis; we just recently discovered “Acoustic Shock Disorder” as the most likely diagnosis.

What about you? Do you find that you startle easily? Did you know that this could be a symptom associated with Multiple Sclerosis? Share with us in the comments!

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Comments

  • Liselle says:

    I’ve had this since I was a small child. I hated fireworks and cried through the entire thing.I also found at jobs I’ve had certain things like cracking gum, ice chewing tapping on counters would just drive me batty. I don’t even enjoy listening to music like I used to. Glad to read I’m not the only one!

  • Pam says:

    I developed clonus after a series particularly bad fights with my husband. I was flipping around like a flounder out of water! He yelled at me ” what’s wrong with you!” and I yelled back, I don’t know and we continued our discussion without missing a beat. Looking back it was kind of funny. When it didn’t stop we went to my neuro and he started me on Lamictal and Klonopin (as needed) and it keeps my symptoms somewhat under control. Because it came on so suddenly, I kind of knew it was related to my MS.
    I can see it makes people uncomfortable when it starts and the anxiety about that makes it worse. I no longer go places where there will be loud noises or new situations. It gets so bad it causes physical pain in my head, neck and back.
    It very much interferes with my life, but I try to keep it in perspective. I can still walk, which was my greatest fear with my diagnosis.
    My MS doesn’t define me as a person, and I am grateful for all the love and support my family and friends show me.

  • Liz g. Bystrycki says:

    My husband has ms and has high sensitivity to sounds and it drives him up the wall. He is deaf and is always turning his aids off. This is very hard for him and I to deal with. It’s somewhat reassuring we are not alone.

  • Maria Amore says:

    Severe anxiety and I always feeling likes someones going to verbally or physically attack. It happens freguently and it has made me agoraphobic! We need a club house! Anyone know of one in San Diego?

  • shirley says:

    I have noise, smell, and light sensory overload! Thought it was my MS. Neuro says “never heard that before with other MS patients”. Husband impatient and does,’t believe it’s.MS – I’m neurotic he says.

    • Tonya says:

      I have major problems to florescent lights, smells, too much noise, eating food etc. My body starts shutting down, I get dizzy, start to pass out, and loose control of bodily functions with a few seconds. Heat and cold definatly magnify things. Lights and heat combined are aweful.

  • Kristen says:

    I am not diagnosed but very frustrated. My first symptoms were visual disturbances. Then I began having the most horrible muscle spasms that just would not stop. In my back and my legs. My forehead, nose, and top of my head tingled for over 5 weeks. I started noticing leg twitching, numbness or tingling , followed by darkness in my eye , then complete loss in only one eye for like 20 miinutes. I went to eye Dr first who said see family doctor, whom referred me to neurology. That was all back in november. I would cry getting out of shower think g I was having stroke, asking my daughter to sit with me on floor. Symptoms completely disappeared for short while- but now are back again. I’m literally so tired I fall asleep at work. My eyes are very sedative to light, and when multiple people are talking….I want to run far away. I cannot focus and my mri came back normal. I have a spinal tap Friday. I am 35, my doctor said today, if normal spinal tap, he thinks it’s just depression- I don’t feel right and haven’t for MONTHS….. I do not believe it’s depression but feel it maybe turning into it!

    • MSAA says:

      Hi Kristen, I am sorry to hear about the challenging symptoms you are experiencing. Please feel free to reach out to our Helpline at 1-800-532-7667 ext. 154 to discuss things further. Perhaps a second opinion from another Neurologist would be helpful. We can take a look in your area to see if there are any MS specialist.
      -Samantha

  • Kristen says:

    Hi, I was diagnosed with m.s in 1998. When walking out of my doctor’s office after finding out that it wasn’t a stroke which is what the hospital they told me and I thought I had a stroke. After finding out that information my newlywed husband and my one year old daughter we no longer got out the door when I fell to my knees and yelled why why do I got this I’m 18 years old still young not even legal to drink yet which I don’t do anyways for it causes my MS symptoms to come back. a. K.A. (exacerbat) as they say. Before I was diagnosed my symptoms included quadruple vision I talk with a slur I couldn’t write with me I couldn’t write with my hand I had to teach my left hand how to write very sloppy like dr. Chicken scratch also walk to the right. Also my right side of my face has dropped my hearing is very sensitive Numbness in my legs fatigue very much so as well as spasms. At that time all I saw was I was a cripple 18 cripple and then I was going to be seen in a wheelchair in years to come and that my life was over so I thought . You know they say that pregnancy becoming pregnant can keep the symptoms at Bay I call BS my now 16 year old boy when I was pregnant with him is when this all came about yes I was stressed because by then still married and having my third child at that time MS symptoms came about and just about crippled me I couldn’t walk and talk right I couldn’t take care of my children while my husband was at work because he had to my father my daddy took care of help me take care of those three kids a man who had never change diapers not even mine LOL change diapers before had to take on all this responsibility and he did. Today I’m 34 years Young and my second husband have a child together as for being amazing very empathetic very helpful when I need things when I was pregnant with my fourth child the symptoms exacerbated but I’m doing alright the I believe that when someone asks you to pray for them, you pray because prayers are free and should be given wholeheartedly! I decided to do this today because I’m standing in the need of prayer and so many others are as well. Let’s pray for each other today! All prayers needed right now. If I don’t see your name, I’ll understand. I ask my family and friends wherever you might be, to kindly copy and paste this status for one hour to whisper a prayer for all of those who have family problems, health struggles, job issues, or worries of any kind and just need to know that someone cares. Do it for all of us, for nobody is immune. I hope to see this on the walls of all my family and friends just for moral support. I did it for a friend and you can too. You have to copy and paste this one, NO SHARING. Praying for several families in need♡rred speech

  • kcj says:

    I have not yet been diagnosed. I have always had sensitivity to light and felt extremely anxious when there us a loud noise or if there are 2 noises at once (TV and music or talking and TV etc). About 6 weeks ago, I woke up feeling exhausted, cold and shivery. I thought it was another uti as I have had episodes like this over the past year and thought they were relating to uti symptoms. However, this time – the symptons got worse and new ones appeared….pins and needles, tingling, burning, numbness, sharp jaggy pains….everywhere but particularly feet,legs, face and hands. Also feel a bit drunk some days though I don’t drink. I had started to feel a bit better until last night when I was in someone’s house who had extremely bright lights and it was a bit warm. My eyes started to hurt and within a couple of hours I felt fluey. Can bright lights trigger an ms flare up?
    I am certain I have m.s. I have metal implants and I’m wondering if I could havememetal poisoning?
    Gp isn’t really taking it seriously and doesn’t know what it is. Not sure how to get an MRI.

    • MSAA says:

      Hello kcj,

      I’m sorry that you have been experiencing some difficult symptoms over the past year and last night.

      If you have questions about MS or how someone gets diagnosed, please feel free to reach out to one of our Client Services Specialists on our toll-free number at (800) 532-7667, extension 154 or via email at MSquestions@mymsaa.org.

      Thank you,
      Emily MacHenry
      Communications Coordinator at MSAA

  • K9MOM says:

    Thank you God, Jesus & Holy Spirit I am not crazy after all. I have been wondering what the heck has been going on with me. I have leaping out of my skin with fear at the slightest possibility of confrontation & the slightest noise scares the crap out of me.

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