Word Finding Problems and MS: Reader Experiences

"Losing" a word during a conversation can be an isolating experience.

I am pretty sure that most of us living with multiple sclerosis (MS) experience this symptom on a regular basis. You know the one - you are in the middle of saying something important, witty, profound (or even mundane), and the word that you need to complete the thought is missing from your brain at that moment. 

Sometimes you can easily substitute a synonym for the missing word, but often (at least for me), even those become elusive.

I have now developed the habit of just stopping in mid sentence. I am pretty sure that this is bizarre and disconcerting for my listener, but I wasn't having much success waving my hands around and patching together words that were only vaguely related to what I was trying to say. 

As with many things MS-related, I found it comforting to hear about the experiences of others in dealing with this problem.

  • I also have trouble finding the word I want, as well as dropping syllables sometimes. I realize I’ve dropped parts of words and run words together, but I don’t always know what was missing. I haven’t noticed that heat affects it, but fatigue definitely does. Since I’m tired most of the time, it happens a lot.
  • I also have difficulty when I am tired finding the right word. I love my husband but sometimes he will jump right in with the word I am looking for. This makes me irritated, which makes the problem worse. If I slow my mind down and really think about what I am going to say it helps. That old saying "think before you speak" takes on a whole new meaning.
  • The inability to find words was one of the things that frustrated me most when the MS was getting bad enough to finally get a doctor to diagnose me. I have always been a talker with an extremely large vocabulary. One day I was at work and had been stressed because my doctor kept telling me that he was certain I didn’t have MS because I never got better (as if RRMS is the only kind), I had been working a long shift at work that day and dealing with a lot of customers. I couldn’t seem to remember the word “easy.” I could come up with “less difficult,” “more simplistic,” and even the French version of easy, “facile.” I think that was the one thing that made me want to keep doing more and more tests until a diagnosis was found.
  • Yes, I also have problems with speech – thinking of a sentence, then forgetting what I started out to say. I try to make light of it and laugh and accept that it is part of my illness. Something really funny happened the other day – I was talking about something, but my mind was elsewhere and I suddenly said, ”black puddings.” Then I said, “What on earth did I say that for?” Now when anything happens like that I start laughing and say that was a “black pudding moment.”
  • I can relate to all of this. I used to be so articulate in my speech. I work in management in a hospital, so I am surrounded by intelligent people. I find myself avoiding talking to these people for fear of sounding like a blithering idiot. My memory is shot. I find myself wanting to participate in a conversation with someone because by the time they finish what they have said, I will have forgotten what I wanted to tell them. Or I don’t remember having conversations with people at all. It is really affecting me in the work place. I can deal with all the physical annoyances, the cognitive is impacting me the most.
  • I frequently forget simple words and must describe the essence or function of the word. It is quite frustrating. I am better at writing (but must have the energy to do so). I suspect it has to do with being able to slow the pace of writing. I believe that this symptom (word retrieval) is getting worse for me but it seems quite difficult to measure. I particularly have difficulty with words when I try to give directions in the car or under any pressured situation.
  • I often forget words, haven’t noticed it being more frequent when hot, tired or anything else and as long a I can describe the missing word or find a substitute it’s not a problem, in fact “room you cook things in” has become a much more common way for my whole family to say “kitchen.” Helps to be able to laugh about it.
  • I have that all the time. Yesterday I was trying to say the word “disco,” but the word would not come to me. All I could come up with was “Bee Gees dancing.”
  • I have found I am removing myself from social situations more and more often. Prior to being diagnosed with MS (2003), I was extremely social. I never had difficulties carrying on or participating in conversations. Now I find that I can’t get my idea out. I forget what I wanted to say. I can’t find the correct words to help explain thoughts. Eventually the words will come to me but that happens LONG after I needed them. Therefore, I remain silent so as not to appear “stupid.” VERY FRUSTRATING!!!!
  • I have always loved words and had a very large vocabulary. I work in a large facility and have always been the “go-to grammar person” that everyone called to have check their grammar. Now I dread people asking me for grammar help because I can’t remember anything. Punctuation was another area I was very good with and now I can’t remember what “the thing at the end of a sentence” is even called, much less where that little “hicky” (;) goes! The only thing to do is to remember that it isn’t going to cause a national catastrophe if I can’t remember a word here or there or where to place the hicky and laugh at myself before anyone else gets the chance!
  • Does anyone ever combine two words into one when speaking? For example, I was going to say “I think I’m going to throw up” but instead I said, “I think I’m going to thromit” (“thromit” being a combination of “throw up” and “vomit”). Another example is “pringling,” which was a combination of prickling and tingling. (I was trying to describe to my neurologist the sensation in my left side.) She just laughed.

Bottom Line: Sometimes this is classified as a manifestation of MS-related cognitive dysfunction, other times it is referred to as a speech difficulty that comes with MS. Regardless of how it is labeled, it is a truly annoying symptom that can hinder social interactions.

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