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Gone In 60 Seconds: When We Suddenly Aren’t Well

Gone In 60 Seconds: When We Suddenly Aren’t Well

In my many years of living with Multiple Sclerosis, there have been so many things I wish I could convey to the people around me that don’t live with the disease. One key concept that would be incredibly helpful for myself and others with the disease, is that we can go from feeling relatively fine one minute to being overcome by symptoms the next. The idea that symptoms can come on so suddenly, often coupled with the invisibility of said symptoms, can be difficult for our friends, family, and coworkers to accept. It’s a fact of life for many with MS and can lead to canceled plans, strained relationships, and excessive amounts of frustration.

How can the change happen so quickly?

One of the big reasons that symptoms can come on so quickly has to do with what we call triggers. I’ve explained triggers in more detail here. The basic concept though, is that there are conditions (like temperature change, noise, and stress) that have an impact on us in a short amount of time. When you have MS, the myelin sheath, which acts as a layer of insulation around our nerves, is damaged. That damage makes it hard for signals from our brain to get where they are supposed to go (either at all or sometimes it just delays them). Different conditions can make that damage suddenly more apparent.

Our brains have problems communicating with the body

You may be thinking, “well if that damage is already done, how is some outside condition causing problems so suddenly?” A good example is temperature. Those electrical signals traveling along the nerve are sped up and slowed down depending on the temperature. When the myelin is damaged, meaning there is less of an insulation layer, outside temperatures begin to have a greater effect on the speed at which those signals travel. While temperature is a common example, there are many conditions that can cause these signals to have difficulty going where they need to go. Essentially, our brains begin to have problems communicating with the rest of our body. With our brain controlling everything, that can be extremely problematic and issues can appear quite suddenly.

Frustration station

If you haven’t experienced it, I’m sure you can imagine how incredibly frustrating it can be to feel OK and then suddenly not. Any plans you’ve made can be derailed at a moment’s notice. Much of the time, you may not even realize what triggered the change, which only adds to our levels of frustration, particularly when there are triggers we can’t expect or control. Temperature is one thing (and a reason why many MS patients rely on devices like cooling vests), but other, less controllable triggers can have a huge impact. I have some issues with sudden noises: sometimes, when I get started by a sudden noise or if something becomes too loud, I begin to experience some pretty severe vertigo. I’ve left many events and family gatherings because the noise level is too high or even too abrupt for me.

We go from feeling okay to awful in a very short time

Leaving events early or canceling at the last minute becomes a hallmark of someone with Multiple Sclerosis. This leads to a massive amount of frustration and resentment with our friends, family, and coworkers. We so often have to say that we aren’t feeling well and we can’t come or can’t stay. On the outside, we often look fine, which adds to the frustration and believability of our claims. It may seem that we are trying to avoid someone or something when that isn’t the case at all. We actually do go from feeling OK to feeling absolutely awful in a very short time span.

What can we do?

Perhaps the worst aspect of this is that there isn’t too much we can do about this problem. Yes, we can take precautions for the triggers we are aware of (like planning appropriately if it’s a hot day). There may still always be moments where we need to bail out as gracefully as possible (sometimes if I can lay down in a cold, quiet room for a bit, I can recover; sometimes nothing but time will help). Having friends and family that can understand and be sympathetic can be a massive help though (remember, stress only makes the situation worse, and nothing causes stress like the feeling that we’ve disappointed those we care about). So I hope that this reaches the many friends, families, and significant others of those with MS, as a reminder that yes, we can go from fine to not well in a very, very short amount of time.

Thanks for reading!

Devin

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

Comments

  • Sorryass
    3 months ago

    Thanks for the article Devin. I get a lot of emails and links to articles, most of which I don’t read except for the synopsis of the articles. tonight (in the middle of the night) I read every one sent from MS Association of America. After reading all of them, I reluctantly created an account at multiplesclerosis.net.

    i was diagnosed with RRMS about 16 or 17 years ago. My first “incident” that med history showed was in about 1986 or so. I was 33 at the time, I was diagnosed at age 50 or so. My wife thought I had a stroke, so she rushed me to the ER. I thought she was driving me to work and couldn’t figure out why was acting so concerned. I had dropped my coffee cup and apparently was mumbling but i have no recollection of that.

    I don’t remember much of the short ride to the hospital, and not much of the conversations with the admitting nurses and ER doctor. just a few short statements and questions in and out. I remember asking everyone present why I was at a hospital because i felt fine and I needed to get to work.

    after a while my wife said “ there, he’s back.” From what I said. She told the nurses that my eyes were bright again and I was “normal.” that was about 2 1/2 hours after we got there, and after a CT scan.

    My good friend was a neurologist, and he suggested I spend the night for some tests and observation. No physical problems with heart, lungs, muscles etc. He said I had had transient global amnesia episode. An MRI showed what appeared to be lesions in my brain, he said he didn’t believe it was MS but he wanted to confirm that with a spinal tap, which showed I had active MS.

    He said the TGA was not MS – related which was hard to understand. He said it was just good luck, serendipity that we discovered the disease as a result of the TGA episode. (I said “gee Chuck, your idea of good luck is different from mine!”).

    sorry for the long story to lead into my comment. I have been injecting Copaxone for 16+ years now, little change in symptoms. My impairments are minor – I can still play golf, hike, paddle a kayak, and walk more or less normally. Golf and kayaking aren’t nearly as good as they were 15 years ago, but I attribute that to aging. I have fatigue of course, poor sleep most of the time, chronic clinical depression, and some tingling and numbness in my fingers and one side of my face, and virtually no libido. I am very open with others about my having MS, and most people are very surprised to learn it.

    It is hard to distinguish aging vs. disease progression. My cognition is generally good. i was worried about that for years, since I derived my livelihood from my brain. I retired from practicing law just two weeks ago.

    Reading the articles from multiplesclerosis.net tonight brought up many issues that I experienced but didn’t attribute to MS. Difficult word and name recall has been a problem for at least three years. My reading speed is slower than it used to be, and my ability to focus and process complex writing is somewhat compromised. Executive function has declined. When I am “in the moment” in court I am still very sharp, same with making presentations to clients and colleagues. But getting organized and motivated is a chore. So I retired to reduce my stress. Memory and IQ testing are positive – it just takes me a little longer to process detailed and complex information.

    To your point about “gone in sixty seconds”, I now recognize that I sometimes want to leave a party or other social situation early, or just lose interest in going at tepee last minute. I find myself becoming irritable and cross for no apparent reason. My sense of direction sometimes leaves me completely. my wife commented on this yesterday after I drove i. the wrong direction after seeing a musical (we are in a strange city, Palm Springs CA, but this was after several days here). She said I have been having problems with directions for at least 2 or 3 years. I became very irritated when she kept telling me we were driving south when we had to go east, and i lost my cool and raised my voice. I think that was fear she was right and how could I be going the wrong way?

    I believe this is due to MS now, after reading the five articles tonight. I sometimes get the “don’t play the MS card again”, and thought that was only me. Overcoming Feelings if Fear and Failure, I KNOW That I Know, But I Can’t Recall, and Gone in 60 Seconds all struck close to home for me tonight. I think I need to show them to my wife, who generally is very supportive but it is hard for her to understand even after all these years.

    I am very blessed, and feel like I shouldn’t put myself in the same class as those who have much more severe synotims and issues. My limitations are so very minor, so when I join a group of MS patients at meetings or talks, I feel guilty. I spill water frequently, and break things when reaching to pick something up at dinner. While that is nothing compared to spasms that I read about, i now think it is an MS thing. It happens so often that it isn’t just a fluke.

    Thanks for listening, if you got this far. Did I mention that I tend to ramble? ! 🙂 !

  • Devin Garlit moderator author
    3 months ago

    Thanks so much for reading and sharing your story @Sorryass! I do like to think that the articles written here are very real and have significant quality to them. I thought this way before I was a contributor here, and even now that I am, I always look forward to reading, not only my colleague’s contributions, but the stories and comments from the readers.

    MS has such a wide range of the ways and severity that it can affect people. All of them are valid and I like to think we do a decent job of covering all aspects and severity of the disease here. Never feel guilty because you aren’t as effected as others. I know how you feel though, there are many groups where it can seem like it’s one person always trying to out do each other. Welcome to the site and please, feel free to chine in and ramble as much as you’d like! Everyone’s perspective is not only important, but highly appreciated here. I personally look at each of my articles as the beginning of a conversation, where I share my experience and then hope and encourage others to share theirs. Thanks again!

  • Sorryass
    3 months ago

    Thanks Devin. That is reassuring. I also replied to Cog-Fog article by Ashley in Austin TX. Wow was that eye-opening. These discussions are very helpful. Blessings to you. I’m sorry you have to struggle with this disease especially st such s young age.

  • eparks
    4 months ago

    Thanks Devin. What you say here is the way it really is. I just recently had a tripped planned to go from Philly to New York. My son and I had planned the logistics, he would come sleep at my place, and we would leave about 5:30 am. Didn’t happen. Out of no where, I was in the ER the night before up until about 4am the next morning. There went my NY trip. Blessings my friend!

  • BeckyAnn
    4 months ago

    You nailed it completely.
    I just read this to my Husband and 2 of my kids and they were like OK hey you need to do this this and this

  • Devin Garlit moderator author
    4 months ago

    Thanks so much @BeckyAnn! Very glad to hear that!

  • Shelby Comito moderator
    4 months ago

    Hi @beckyann, I’m so glad this article resonated with you and that you shared it with your family! I hope it helped them understand a little bit more about what you’re going through and how they can best support you. Thanks so much for sharing! Best, Shelby, MultipleSclerosis.net Team Member

  • dtwhite1
    4 months ago

    P.S. Every time I see your name I am so excited and thankful to see what you have to say. Wish I could explain m.s. as well as you! Thank you much!

  • dtwhite1
    4 months ago

    I always say I hit a brick wall. Saying I don’t feel good doesn’t convey what is really going on with the M.S. I’ve also tried to quit saying my M.S. and say “the” M.S. I usually only have 3-6 good hours a day and you have to minus the time it takes getting ready (Shower, get dressed, fix and eat breakfast) it could be an hour. Then the time to get/drive there-15-30 minutes So 1 1/2 hours are taken away which leaves you an hour to meet someone cuz on a bad day you still have to drive back home. (Thats a three hour day.) On a six hour day which is maximum for me. 2 hours are gone (1 hr. getting ready) 1 hour to get there (30 min. each way) I may have 4 hours depending on noise etc. at my moms I can visit 4 hours because it is lowkey. But If I don’t get home within those 6 hours my body pays for it, my son has to deal with the rath of Dawn (my own poor time management) and I may be in bed for 1-2 days after going over my limit. That’s what people don’t see. I have to make sure not to do anything a day or 2 before so I can hopefully make it to outing. I really do try…people are really important to me to see but somedays even with the best laid plans my body doesn’t cooperate. Wish you could see the planning behind the curtains to make us “Look Fine”.

  • Devin Garlit moderator author
    4 months ago

    Thanks you @dtwhite1! Appreciate you sharing some of your experience!

  • LadyChellie
    4 months ago

    Thanks for the read

  • Devin Garlit moderator author
    4 months ago

    Thanks for reading @LadyChellie!

  • Lisa
    4 months ago

    You have, yet again, put into words the thoughts my fuzzy brain is trying to express. The loud and sudden noises thing was something that I thought was just me. Thank you.

  • Devin Garlit moderator author
    4 months ago

    Thank you @Lisa! It most certainly isn’t just you! There are a lot of sensory type issues that plague many people with MS: https://multiplesclerosis.net/living-with-ms/my-sensory-overload-experience/

  • mtoddh
    4 months ago

    Wow Devin… This sounds like an exact description of me. I forwarded your story to my boss and to my wife.

    Thank you so much for your story!!!

  • Devin Garlit moderator author
    4 months ago

    Thanks so much @mtoddh! I hope they read it and get a little bit more understanding of you!

  • ConqueringDaily
    4 months ago

    Another “Thank you” here! I think your headline: Gone in 60 Seconds is a great way to help start a conversation explaining what we experience.

  • Devin Garlit moderator author
    4 months ago

    Thanks so much @ConqueringDaily!

  • Newfit
    4 months ago

    Great article! Thanks for posting.

  • Devin Garlit moderator author
    4 months ago

    Thank you @Newfit! Appreciate it!

  • Lynda D.
    4 months ago

    This is the first time I have logged on and made a comment. But…..Devlin you are my favorite writer. You ALWAYS nail it right on the head. I always save copies of your letters to my “keep” file. I am going to share this article with family and friends, AGAIN!!!. THANKS for writing and so eloquently describing exactly how I feel. Lynda

  • Devin Garlit moderator author
    4 months ago

    Thanks SO much @Lynda D., really appreciate you taking the time to say that!

  • Lynda D.
    4 months ago

    Ooos on the typo Devin.

  • Sbyrd2
    4 months ago

    Devin, Again you have taken all our feelings, symptoms and family’s view on MS. I realized that we are the only ones that understand how drastically life altering MS truly is.. Thank you for your voice

  • Devin Garlit moderator author
    4 months ago

    Thank you @Sbyrd2, I appreciate you taking the time to say that!

  • SueK
    4 months ago

    Devin, you are absolutely right. This disease is much like New England weather. It changes in a matter of moments and it entirely unpredictable. I am frustrated when I wake up refreshed like today (yeah, that surprised me too) and a few hours later I feel like a truck hit me. After 20 years it still doesn’t cease to surprise me.

    But this does lead me to one question. With a disease that is so unpredictable even for us veterans, that can change on a dime and is completely invisible, why is there so much scorn towards those that do not understand it as an outsider? Granted, some of us are blessed to have supportive family members that ride the rollercoaster with us, but those not as close or even complete strangers? I mean let’s get real! If I don’t know what to expect, how can I been offended by those with no knowledge of MS to know what is going on in my body?

  • Devin Garlit moderator author
    4 months ago

    Thank you @SueK! I think a big reason people can be so scornful of it, is because they lack the knowledge. I think there are symptoms and aspects of this disease, like the one discussed here, that simply aren’t talked about much. They are aspects that are unknown to so many people. Even some folks who consider themselves knowledgeable about the disease, still don’t understand key aspects like this, which was a big reason why I wrote this, so that folks could share with friends and family and say, see, it’s not just me, I’m just flaky, this is a real issue!

  • artlover1
    4 months ago

    I appreciate your comments!

  • potter
    4 months ago

    I thought my husband had some inkling about what I am going through. I found out recently I was wrong, he was in a bad mood and said I didn’t smile as much as I use to. I told him that I had less reason to smile. He told me not to use MS as a excuse everyone has their aches and pains and I needed to suck it up. It really hurt my feelings and made me feel even more alone dealing with my MS. Potter

  • Sbyrd2
    4 months ago

    Potter, you are not alone my husband tells me that the “pity party” is played out.. I sure would not want to have MS nightmare for a poor pity role!! You think that family, friends and if you are able to work co-workers. No, we have to rise to the challenge to be normal right. I have completely decided that only way for anyone to understand is to have MS. Love ❤️ and pray for you all in our journey!

  • Devin Garlit moderator author
    4 months ago

    I’m so sorry to hear that @potter! I find that a lot of people don’t understand nearly as much as I think they do!

  • LeeAnn
    4 months ago

    Devin you did a great job on explaining this! I am going to print it out and show it to people when they start complaining about me canceling at the last minute or have to leave. I’ve gone through this many times. My daughter use to say that I just don’t want to come. This caused many problems. Although she has in the last couple of years says she understands it’s hard for me to know if she really does or is just saying that. I’ve gotten a lot more people to finally understand what I’m going through and that sure does help. Thank you for writing this article.

  • Devin Garlit moderator author
    4 months ago

    Thanks so much @LeeAnn! I really hope others will read it and have a better idea of what we all go through!

  • caya1430
    4 months ago

    This article is what I will be having my loved ones read. This is exactly how I feel a lot of the times, especially during this season. It’s a terrible season for me. Thank you Devin!

  • Shelby Comito moderator
    4 months ago

    Hi @caya1430, thank you so much for reaching out. I’m so glad this article put words to what you’re going through right now, so that you can share that with your loved ones. I hope it helps them better understand how to support and care for you. Thinking of you and please know we’re here for you! Best, Shelby, MultipleSclerosis.net Team Member

  • Devin Garlit moderator author
    4 months ago

    Thank you @caya1430! I was very much hope this would be shared with other’s loved ones!

  • Nonnie28
    4 months ago

    You are always able to take the jumbled words out of my foggy mind and put them to paper, Devin. “Here, read this. This is what I mean!” I’ve been known to say.

  • Devin Garlit moderator author
    4 months ago

    Thank you @Nonnie28, I’m very happy to hear that! I hope it helps enlighten those who don’t have the disease!

  • jan18
    4 months ago

    ALSO — how about my condition changing very quickly from wiped out, weak, tired, irritable, “l want to be alone” to energetic, talkative, very sociable, humorous. Not so good for credibility.
    Devin, thank you so much for sharing your knowledge in well-crafted writings that I enjoy reading in their entirety. Above all, you are simply a really nice person.

  • Devin Garlit moderator author
    4 months ago

    Thank you @jan18!, that’s an excellent point, credibility can very much become an issue with this problem!

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