I have been having a lot of trouble with speech lately, but at least I kmow what it is. Tonight, at our religious meeting- I suddenly couldn't understand anything (I just learned this is called receptive aphasia). And of course, I wasn't able to communicate either.
This problem, hearing speech-but with zero comprehension, has only happened twice before this evening. Is there any treatment?
Let me know if you find any! I truly understand how scary this can be!
I have the "can't understand anything" problem. Especially when I go to the doctor's office, I went for my pacemaker check and they started giving me instructions on how to use this gadget and I just sat there, nothing they were saying was sticking in my brain..
I guess there have been times when I have asked people to repeat their statements to me because my brain was busy with something else as they were speaking the first time. That's less scary than embarrassing, even though I have no clue how to prevent it. I do try hard to pay close attention anymore (unlike in high school physics, where I slept through classes & stillI aced all the tests!).
I've had what you describe too. I think it's some kind of auditory processing disorder.... It's especially bad when I'm having a relapse. I find that if I am going to an appt, I need to bring someone with me, or else I will not be able to recall what the doctor said.
The issue I was originally thinking of is more like this:
I see and hear people (family/friends- people that I know are speaking the language I speak) and it doesn't sound like english to me. I can see that they all understand each other, but I can't understand them. For me, this only seems to last a few minutes... Maybe it's not receptive aphasia. All I can say for certain is that it's scary.
This has only happened three times in the past two years. I just want to know if it's treatable. (And if my neurologist is the right doctor...Should I consult a psychiatrist??)
Hey - I had something very similar to this during my initial attack. I did not know that this was what it was called (if it's the same).
I'm so sorry you are going through it. Took months for relief for me. This kids would be talking to me and I could not comprehend anything - I could hear them and their words, but could not comprehend it, and return talk. it was horrible. I just couldn't understand anything. Speaking was slurred during this time as well. Did not realize this could be what you are mentioning now.
Rest your mind lady - rest, rest, rest. No stimulation. Even the computer/reading screen, etc. I do not know if it is treatable. Could be a relapse for you - def. let your neuro know.
It sounds like you both have had the same thing happen to you... I just hope it truly is neurological, and not a psychological thing. Not sure how my husband would cope if was losing my body, and my mind.
I hadn't made the tired connection before. I exhausted and somewhat overstimulated all three times. There must be a connection.
I'm going to take your advice, Shell. I will check on any additional posts to this topic in a few days... No more computer or tv for a while.
I tried posting last night but i've been having a lot of computer issues and lol they are computer issues, not me this time lol but i see it didn't make it. I was going to ask if you were sure it was receptive aphasia and not central auditory processing instead but it looks like you've thought of that.
What your describing does sound more like receptive aphasia than CAPD though, " Receptive aphasia involves difficulty understanding spoken or written language. The patient hears the voice or sees the print but cannot make sense of the words." which fits more in line with your comment "it doesn't sound like English to me."
CAPD is different, its not that people seem to be speaking a different language but that the language they speak and understand, is jumbled up like its gone threw a blender and becomes confusing, they understand the individual words and there meaning but what they are being asked or told isn't exactly clearly understood. eg
Tammy, put your clean clothes in the cupboard, put your dirty clothes in the wash basket and whilst your in the laundry check if the dryer's finished.
If a persons got CAPD they will be confused by the multi instructions, they could quite easily put the clean clothes in the wash basket and ask what was they had to do in the laundry?
They sort of get it but not quite right, following general conversations is basically the same, a person with CAPD will sort of get what everyone is talking about but not exactly everything. If their auditory comprehension is slowed down enough it can inhibit participation, by the time they work it out the conversation has already moved on etc.
I sometimes have a lot of confusion following the conversation or in fully understanding what i'm being asked or told, more so when i'm relapsing or fatigued. I have also experienced during a relapse, not being able to remember anything i'd just read, at the time i had to read things over and over before i could start remembering something and it was only after reading the same book 5 times in a row before i was able to talk about what i'd read. Prior to the repetition it just wasn't sticking, not sticking around long enough to transfer from my short term memory to my long.
For me when it is happening it really stands out because i am known for both my auditory and visual memory skills and my family always notice it. I see it more as a temporary hick up, where my short term memory is playing up, it does normally get better after i've rested or cooled down or de-stimulated but with the reading issue, i was in a relapse and i just didnt want to chance it becoming another lost piece of me. (lol i'd rather you'd cut off my right arm, I am a book worm!!)
I wont bore you with what i did lol its straying too far off topic but i just wanted you to know you're probably not loosing your mind, though i really get how it can feel like it!
It helps if you find your tipping point, know just how far and how much you can do before your cognitive skills start slipping. I sort of see it as being no different to the physical limitations we have to work out, though the cognitive is more easily hidden, its probably still happening in the background. Physical fatigue we more easily seem to get but there is also mental fatigue too, if i am physically fatigued then it doesn't take long before the mental fatigue kicks into play.
My rule of thumb: not to expect more than I am able, pushing to far beyond my limits will only lead to burnt toast :o)
Oh, JJ, that sounds sooooooo familiar. Takes me back decades to when it was thought I might have hearing loss (didn't then; do now). That ENT doc explained it as an inability to screen sounds, focus on the ones that matter, and disregard those that weren't important. It was -- and still is -- maddening. Early 1980s, IIRC (underscore that first I!).
If it's what I had, it's definitely not phychological - all attack related. And, it can improve, I wish this for you :) Mine was not spotty - it was steady. Hopefully you are indeed not reading this right now, and minimizing stimuli ! (((((Hugs))))) shell
I was just reading these posts again, what a mess we are and it so difficult to figure it all out. These episodes are with me all the time, nothing "spotty" here.
Since I only see my MS specialist once a year it makes it hard to remember all of this so I can tell her whats going on. And, yes, I keep notes...several in a years time and it all changes so much in that time.
I have noticed something similar to this in the last couple of weeks...the time it happened the longested was when the nurse from Shared Solutions came over to show me how to inject my Copaxone last week.
She was here about 2 hours...I already wasn't feeling great... Of course she was giving me a lot of information, my daughter-in-law was here asking questions also...I was getting very tired, but tried to act normal. :)
At one point she started talking to me for quite some time...I can picture her face in my mind now....she was explaining something to me....I heard her, but I did not comprehend a single thing she said. Not one word. I remember thinking to myself.......oh no, what is she saying? I just stared at her....then, all of a sudden, I was able to understand her again.....It seemed to last for ever, but it was probably less than 30 seconds...
This has happened twice ....both times only lasting seconds NOT minutes! Both times someone was talking to me...It was like I zoned out mentally....I guess it kind of "scared" me because I remember both incidents VERY clearly. (but not what they said lol)
It sounds like you may need to look into this too. One of the things he asked me was "we're you twitcthing at all?" And I had been twitching, I didn't think it was important. So that is another thing to watch for.
What exactly do you mean by twitching? I know I wasn't twitching, but I want to make sure I understand what you are talking about. (Lately I have been getting a lot of painless muscle twitching mostly in my legs and torso, but not on my face.
I read you are going for a EEG....if it is seizures, does the dr think they could they be caused by your MS?
I hope all goes well and they will figure out what is going on ....and fix it :)
The intermittent muscle twitching we usually feel are called fasciculations. Like most mser's I get those too.
What happened during the strange episodes was entirely different. It was hard and unpleasant. It affected my jaw, and most of my body. It wasn't as bad as what they show on tv, when people are having seizures- so that's why I didn't know what it was. It basically felt like electrical surges-causing muscle contractions all over my body. I don't know how to describe it any better. I'm sure someone else on the forum has experienced this... Hopefully they will see this, and have a better way to describe/explain. At the time, although I was aware- my consciousness was altered somewhat. I just hope my doctor can get it under control. The whole process is very disconcerting...
This is the best I can manage for an explanation. I hope it helps.
As for whether it can be caused by my ms? I have read that while seizures are more common in people with ms, than in the general population- it's still pretty uncommon. ( only 3% - 5 or 6% is the estimate in people with ms). It may mean epilepsy and ms, or they may decide it's from my ms... (Or they may decide it wasn't a seizure at all. We'll see next week.)
What you describe does sound like it could 'possibly' be a seizure type of event, so its a good idea to get that investigated, hopefully you'll know one way or the other after the EEG. Please let us know what happens!!
Clonus activity is usually associated with seizures. Perhaps the causes are similar. When I have clonus, my legs will jerk until all the muscles are contracted in the leg, and it stays that way for a second or two. It's almost as if it has to get all that out so the leg can move normally - rather like shaking off the dust. I can't do anything to prevent it from happening. I try to relax the legs and move them very slowly, but it doesn't help.
I used to get clonus of the torso, which looked rather like a seizure. The back would contract just like my legs do, and then it would relax again.
Aphasia is really scary too. I've had the normal MS kind, where you can't talk because none of the words you want are in your head. I've also had the total lack of comprehension when somebody's speaking to me, but I'm not sure if this is just a total failure to pay attention, or if it's me zoning out. Perhaps both.
At any rate, it's frightening ,but not life-threatening. Let us know how the EEG goes!
Tammy, I'm so glad you brought this up! Last December and January I had similar episodes of what I'll call "bad auditory processing". When people talked to me, it sounded like a bad cell phone call - all garbled and mixed up. It also sometimes sounded like listening to single side-band (for those of you in the HAM radio world). I told my neuro about this, and he said it's probably a flare, and to keep him posted. It was bothersome, but I didn't want to do the steroid route, and eventually it went away (like so many other minor flares I've had over the past 25+ years).
You're not alone!
I'm also curious about your EEG results. Thinking of you!
Hello! I got my EEG results back today. I don't have epilepsy, but my neuro still thinks it was a seizure. For right now, I'm just supposed to keep up with taking my gabapentin. It was originally meant to be an anti-seizure medication. We are going to "wait and see" what happens now.
I've done more research on my own though. I think it may have been an atypical migraine (aphasic migraine). I don't remember a headache, but I guess you don't always have a recognizable headache with this type of migraine. The same symptoms do occur in ms, but with flares, they usually last until the flare is over- like Shelly was talking about. My episodes are very transient.
Thanks for all the support! You guys are awesome!!
Sorry to say this kiddo but I'm pretty sure, that if the EEG didn't record one of these events you have, it doesn't mean that you still cant have epilepsy or what's happening has to be something other than seizures, if that is what your neuro suspects from what you've described, its still quite possible.
Our youngest was investigated for epilepsy when he was younger, his EEG was overly active but nothing else was found and it was explained to us at the time, that he could still be having epileptic seizures, the EEG isn't a definitive test, it is very possible that he just didn't have an event during the testing. Kids with Autism commonly have Epileptic seizures of some kind, so it was high on the list of possibilities, though it actually turned out to be silent contemplation.
lol He was just thinking and tuning out, which sounded and looked like 'Absence' seizures to everyone in the know. The penny dropped after I thought to ask him what he was doing and the frustrating little bugger said he was just thinking and didn't 'want' to answer, he even gave examples grrrr!
I've had this site saved for awhile, you might like to read through it
This thread is really interesting to me since I've had something similar happen a few times. Once I was actually at the eye dr and he asked my husband if I had epilepsy. We never really got an answer as to why this happens though.
Have you considered the possibility of this being a paroxysmal symptom of ms? I'm new to this and not sure if this has already been discussed - not a sharp day here - but I thought it worth mentioning. Something about this popped up on Facebook this week and it mentioned that paroxysmal symptoms can sometimes look like seizures.
Original link mentioned I saw in Italian if you use a browser that translates: http://www.aism.it/index.aspx?codpage=disturbi_parossistici
Similar links in English at a quick search: http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/seizures/index.aspx
Hi tammy!. I've had exactly what you're talking about and it can switch on and off in one very brief conversation. I've had someone speak and not understood a word of it for first few seconds and then play catch up during next few. I've also had trouble with reading. I get so busy hiding my symptoms from the world that I forget to tell doctor about them. Keep a log of when it happens and some information about what's going on before and after. Docs have never been able to trigger a seizure but still suspect it bc of my episodes. Good luck.
Ps. On a positive note, I never had trouble with speech and writing at same time. Just explain to people and they will be patient. I had to have people explain even something as simple as two sentences for more than a month. It's frustrating but be patient. It may resolve on its own.
JJ, thanks for the advice, as well as the website. I think we may be watching this for a while... What are the odds that I will be having an EEG when I have an episode? My doctor emailed me again today. He said pretty much to same thing you did, when I said that I was not going to worry about it anymore.
Laura and Buffy1970, It seems like a lot of people with MS have had this (or something like it) happen to them. I don't think it's exactly a paroxysmal symptom- but who knows!
I'm used to the stuttering/and word finding problems. My friends and family are even getting used it when I substitute a completely different word than the one I wanted. (Example: 'box' instead of 'belt', or worse, lol!)
I'll restart this thread if I learn anything of value to anyone.
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