It does have a name. That maddening feeling of being stuck, unable to express what’s on your mind. In the Multiple Sclerosis community, it’s now called fumbling word vomit.
In her piece, Ashley Ringstaff details what many of you have experienced—that inability to find the right words in the moment. It’s yet another piece of MS that’s hard to live with.
We posted Ringstaff’s piece in the MultipleSclerosis.net Facebook page, and more than 100 of you commented, venting along with Ringstaff and sharing solution as well.
Here’s what you had to say.
“I was misdiagnosed as having a stroke.”
Unfortunately, it is common that doctors and others don’t always connect the dots. The good news is that an inability to find the right words does not mean you’re having a stroke—but that this is simply another side effect of multiple sclerosis.
“I had this happen and I was misdiagnosed as having a CVA (stroke).”
“This happened for the first time to my 30-year-old son a few days ago. None of his texts were making any sense, and when I was able to have a verbal conversation he could not spit out the correct word. Everything was scrambled. I could tell he was frustrated, but I was scared to death thinking he was having some type of stroke.”
“It is reassuring to know other people experience this, too.”
Several of you shared that you felt relief just in knowing that you weren’t the only one suffering from this side effect. In fact, word problems are common with MS—just not commonly spoken about. Education is key. Knowing what is happening and why it is happening can help many find peace and acceptance with this part of MS.
“Wow. Now that I read this, it makes sense. I didn’t know this was a MS symptom.”
“It’s so important to share things like this. I have found that the doctors are not always forthcoming with what you might expect with MS. It is reassuring to know other people experience this, too. The first time it happened to me, it scared me to death. I had no idea what was wrong.”
“It’s comforting to know that I’m not the only one.”
“I find that staying calm helps the most.”
Pausing, taking a mental step back and breathing can work wonders. It’s easy to get frustrated and emotionally stirred up when you can’t express yourself. But the alternative choice of staying calm and slowing your breathing can help work as a reset, potentially leading you to be able to find your words again. At the very least, deep breathing has never made anyone feel worse.
“I find that staying calm helps the most. I take a deep breath and think if there are other words I can use to express my thoughts. Or I just flat out tell the person I’m talking to that I sometimes have trouble finding the right words due to some nerve issues in my brain.”
“If I start to write down the thought that is stuck in my head it will usually break the log jam.”
Writing information down uses different parts of the brain than speaking does. We like this possible solution, which may work for many of you. Next time you’re stuck, put pen to paper to see if that movement loosens up thoughts and words.
“I was glad to read that she was ANGRY.”
Anger is a natural reaction to being unable to communicate as easily as you once could. If anger is what you feel, go for it—allow yourself to feel angry. There’s nothing wrong with venting your feelings. It’s all part of the process.
“As strange as it sounds, I was glad to read that she was ANGRY. So many times, I read other articles and it comes across as “la-di-da”. When I see the word in my head and can’t get my mouth to form it, it makes me incredibly mad. This entire disease makes me impatient, and angry, and annoyed. But I literally see the word in my head! Grrr!”
“Making me so angry. I have to take A LOT of deep breaths.”
“Learning to accept it is half the battle.”
As new aspects of MS present themselves, it can be difficult to dig deeper and find new levels of acceptance. Take your time. Be patient with yourself. One way or another, you will find your way through this.
“I, too, live this everyday. Learning to accept it is half the battle. Slow and steady.”
We want to say thank you to everyone in the MultipleSclerosis.net community who opened up about this topic. We appreciate your candid sharing.
Finding the right words I very frustrating. I notice it most when I meet new people, talking on the phone about bills, banking, iPhone issues, or when I’m in a stressful situation often I notice it most. Sometimes I tell the person upfront that I’ve got Ms & sometimes I get “tounge tied”. So embarrassing especially for those who have no idea what Ms is & that it isn’t a stroke. I also have trouble with basic math when trying to count out my money at store check outs.
“That lost word tongue tipping” the previous is a misquote from Robert Frost.
It is horrible, this thing somewhere between 20 question and Charades. I struggle to find the appropriate word only to lose my entire train of thought. It is not so bad when I am around those who know me well. Because they seem to intuit the word I cannot find. Those close to me also understand when I move into Simile or Metaphor to express myself. Talking to strangers is the worst. there is stress in just talking to somebody you don’t know and that alone increases languages inaccessibility. The longer it takes to find the word the more stressful it is. It becomes a vicious circle of misinterpretations and a nearly tactile frustration between the both of us. I used to be so good with language. I never was very good at punctuation. When communicating I find that writing (with the exception of that punctuation issue) is a much better way to get my point across. However, that is something I cannot rely upon during a discussion or a simple sharing of information. When in a conversation with a stranger I find myself telling them I have MS and it causes some difficulty in word finding and to please be patient with me. Sometimes this helps and sometimes it is like I am a stutterer and they just start trying to fill in the word and it all goes downhill from there. I went to Art school with an Aphasic. People were always filling in his sentences for him. It was horrible when they tried to finish his sentences the frustration apparent in their tone of voice. the whole thing was really sad! The Man was brilliant and spoke almost entirely in metaphors you had to change your whole way of listening and processing information to understand him and once you got the metaphor he was expressing there was a depth and breadth to his communication that few others were capable of. I must admit communicating with him was difficult even laborious at times. You had to listen with intent, parsing the information and building it into the metaphor. And it could be exhausting.
Now having been on both sides of this I find myself making decisions on what to speak about based upon the effort it will take and the value I perceive it will have when they finally understand the point I’m making.
I talk alot about the weather.
This was great. To read that there are others that also have this issue makes me feel relieved to know I’m not the only one. Do you have any other info about this?
Thank you.
Virgie Gifford
Thank you for reaching out with your comments, Virgie. We do have some additional information on speech difficulties with MS symptoms, you can find this on our website here, https://mymsaa.org/ms-information/symptoms/speech/. You can also find the original Fumbling Word Vomit post on the MultipleSclerosis.net page here, https://multiplesclerosis.net/living-with-ms/cognitive-issues-speech/. As others living with MS have experienced this also, you can communicate with individuals on MSAA’s online peer support forum My MSAA Community, https://mymsaa.org/msaa-community/my-msaa-community-forum. Here you can discuss different issues related to MS with others in the MS community. Thank you again for reaching out and if you have additional questions please feel free to email MSQuestions@mymsaa.org. Take care, Angel, MSAA Client Services Specialist