wondering if this could be a symptom ... if it's worth mentioning to my doctor ... or whether it might be totally unrelated.
For the last couple years, I've been noticing some problems with my speech. Like mixing some of my words around, getting them in the wrong order or swapping the first letter of different words. Like dyslexia in my speech.
The last couple of weeks it seems worse to me ... almost like my words are stuck and I feel like it's harder to form sentences. I mean ... I can. But I feel like I don't always make the best sense.
Then tonight, I was talking to a couple people and I swear I said one word and they all told me I said something else. I thought they were joking, I was so sure of what I'd said.
Just not sure what to think of it? Or if it's even worth thinking about.
This also happens to me. Most of the time I don't catch it until someone tells me what I actually said (vs. what I thought I said). Sometimes, I even hear it and stop and correct myself. It's very frustrating and can be (depending on the circumstances) very embarrassing. It's one thing if you're just having a conversation with family or friends, but if you're at work or giving a presentation, it is really awkward. I don't know if there are any tricks to work around it since most of the time, we don't know when it's happening.
I suffer from this a lot especially when I’m tired. I’m meeting with dr next week to discuss. Not only is it frustrating to me but my husband. Not great for effective communication.
Definitely mention to doc as it could also be mini strokes that do happen in Lupus, especially since you say it’s more frequent now. Sounds like it’s a bit more than normal brain fog that we all go through. Please call doc today!
I’m afraid I’m a “me too” for this one. Sometimes when I’m on the phone at work I hear non-words or the wrong words coming out of my mouth. It’s a wonder they haven’t fired me.
Me too! Starting to ease up after 2 & 1/2 years. Also would just stop talking mid sentence having no idea what I was on about. Best Wishes to you Kaz xo
This is not uncommon in Lupus. Difficulty finding words, recalling words, short term memory, focusing etc. are all symptomatic of Lupus. It has to do with the electrical signals in the brain not being sent properly. I too was evaluated by a Neuropsychologist. I did so poorly on the tests, it's what ultimately sent me to a rheumatologist at UW-Madison. To resolve this issue, I take Strattera, which is an ADD medication, and it is helping. Strattera works really well to treat this, because it is a non-stimulant medication. Because I don't have traditional ADD, if I take Adderall or Ritalin (stimulant based medications) etc. I will feel anxious and hyper. It is important that those symptoms are monitored, though. In most cases although cumbersome, these symptoms are not a result of permanent damage or inflammation. However, I've read where this can be the case, and there have been instances where doctors have had success treating patients with medications that are typically prescribed to Alzheimer patients. Have you had any difficulty speaking? That was something else I experienced. A few years ago, I had issues with Aphasia. I sounded as if I had had a stroke when I tried to speak. I had muscle weakness, coordination difficulties, and my gait was awkward. I spent a week at Mayo in intensive PT/OT, and found out that this can happen with Lupus also due to electrical issues. Most of it has been resolved, but I still have some trouble. If I'm speaking for a long time or singing; it will fatigue my mouth and vocal chords. I still have weakness in my legs and arms, but it's nothing like it was. Previously I was completely reliant upon a walker. It is frightening to think all of this can happen with this disease. The only thing that gives me any peace is knowing that it could be so much worse.
Oh my goodness. This is the first time I have ever heard anyone mention this topic of yours. I have the same thing happened to me.
I agree with Sherry. You may be having a mini stroke.
I think that is a very strong possibility. I would urge you to see a doctor.
I had all of the symptoms that you have talked about. And didn’t think anything of them. I just thought it was a lupus thing. But I think it was a mini stroke, many times. I just couldn’t figure it out. I have just recently had a brain lesion. And four months later a stroke.
Not to alarm you, but maybe you can avoid a stroke if possible, if you seek a doctors help.
Concerned about you
Grace
I have the same problem. I would be funny to get us all in a room together and video our conversation! I think a lot of my problem is because of the chronic pain. This illness takes a toll on our bodies and pain/stress can cause it to do crazy things. My neurologist told me much of this was because I was in a “fight or flight” response that most people only experience when they have a sudden trauma, like a car accident. We are experiencing daily pain and trauma,long term.
This happens to me too when I am tired or talking too much. My brother started to talk like he was having a stroke and lost control of his mouth and throat muscles. He went through a lot of testing to find out that he has Myasthenia Gravis. I have read that a few people with lupus can also develop MG so make sure you discuss that with your neurologist.
I do feel better about my own speech problems now that I see I am not alone!
I have the same issue I am currently working with a neurologist and memory testing they did CT scan no sign of stroke.
I can go through my normal nights routine get up in am not remember a thing. I had a conversation with someone in the grocery store I have no memory of it. The only way I know it happened was a few days later they asked me if I had any further questions about our talk. It is a scary thing to go through. I stopped working in April this year because it was becoming an issue for me. Good luck I hope we all find answers and relief.
Kinda agree with TJ- In this high stress society we live in this can happen as a consequence- I call it 'computer overload' - your mind is just trying to track too many things atone time. This also can happen as a result of depression- which many people with a chronic illness can also suffer with I also had this as a result of a migraine syndrome Lots of different causes- not all sinister
You described this very well. I have been experiencing this same thing exactly how you put it. It’s very frustrating to say the least. I Chalked it up to another nasty symptom of Lupus. Sometimes I know what I want to say but it just won’t come out. My speech feels broken up almost like a stutter but not quite. It also seems to be getting worse. I’m so sorry you’re going through this and I’m sending you a big hug! Sometimes there is comfort in knowing that someone out there knows what you’re talking about and understands too!
Lots of hugs,
Lee
This is a very interesting theory on why we do this. I notice that my ability to express myself severely declines when I'm in pain. It's highly frustrating, as a lover of words, to not have the words and expressions on hand like normal. Just yesterday I felt like screaming because I was trying to say something, and it wouldn't come out right, and poor hubby tried to put me out of my misery by saying, "I know what you mean." I wanted to throw something because by that point, I wanted to at least get the right CONCEPT out of my mouth, even if it wasn't the initial words I meant to use. Seeing it as a fight-or-flight thing would explain it a bit. Though I'm not sure if that jives with the difficulty with decision-making I usually go through at the same time. Who knows. Weird stuff.
However, I do agree that saying the wrong word entirely or switching first letters goes beyond the average Lupus fog moment. I do find myself doing that in my typing sometimes, but never my speech. It is most definitely worth talking to your doc about!
TJ said:
I have the same problem. I would be funny to get us all in a room together and video our conversation! I think a lot of my problem is because of the chronic pain. This illness takes a toll on our bodies and pain/stress can cause it to do crazy things. My neurologist told me much of this was because I was in a "fight or flight" response that most people only experience when they have a sudden trauma, like a car accident. We are experiencing daily pain and trauma,long term.
My speech has been iffy but worse then that is forgetting what you are saying in the middle of a sentence....thats my biggest downfall.My train of thought seems to wander,therefore my speech is unpredictable at best
I am having a neuropsychological evaluation thought these things where connect to my Brain Aneurysms corrective surgery not the Lupus. Either way must find out why i have inquired the speech issues. you should tell your doctor about all of that it could be a number of things or nothing.