Speech Problems

Thanks for your replies Tammy and Rachel.

Rachel, what you are saying sounds very much like what happens to me. It's as if I am hearing the words in my head but they just dont come out of my mouth! I can have very long pauses when I start to say a word as if my brain is trying to catch up and sometimes I am totally unable to get the word out.

I suppose, as it causes me no pain, it's not a major issue but for someone who has never experienced any speech problem before it is quite upsetting and embarrassing...I now put off talking to people especially on the phone and if I really cant get out of it I start the conversation explaining I have problems with my speech...

The list of questions I have for my consultant is getting longer an longer! Thanks again for your replies, I'll let you know if I find any information anywhere Rachel

Hi Natalya,

Welcome to the forum.

You can have speech problems with Lupus if there is any damage to the brain in the area where speech is controlled. There could also be a neurological cause which is called dysarthria.

In my case I happen to have both. I always know what I want to say I just can't always get it out. Sometimes I can't start the word. Other times I stutter. Then there are times the end of the word becomes slurred. It is always worse when I am flaring or extremely fatigued. Once the disease is back in control the symptoms are lessened.

I am sorry you are going through this. It can be so frustrating. You think everyone around is going to think you are an idiot. You should mention your speech difficulty to your doctor.

Take care,
Lazylegs

Hi,
yes me too.

I ahev trouble typing and formulating words nad actulayy do stutter sometimes, not severely but end up trying to say sometnhing and what comes out is eh, eh , eh or just the start of the first words repeated several times.

And the thing you were saying about the delay reaction between thinking and speaking, I get that too. I alos had this with my vision aswell, where i would see an oblect and instead of unconciously knowing what it was, there would be a delay before my brain kicked in and made the connection and told me aht I was seeing. This has improved a bit since I have been on this dose of steroids and I think being on a higher dose of methotreaxte has also hepled this.

I do not have an explaination as yet and am seeing a neurologist tommorrow but do know as other hasve said that inflammatory proocesses in the body from the diasease can cause damage to diffterent nerves and neurological pathways. These are usually treated like the rest of the illness with steroids or immunosuppressive drugs.

I hope you get an answer, but I would definately persue it with a doctor.

Good luck

Take Care

Cassie

I have battled similar problems for as long as I was diagnosed with sle. I will "lose" a word, can give the definition, how many letters it has, what it starts with.....but that WORD is gone for however long my brain chooses to "lose" it. If I hear the word, I recognize it, but it doesn't stick in my brain unless I write it down.
When I told rheumy #1 about this, he discounted it and said it could NOT be connected to sle and I needed to talk to a counselor about it. HUH??? He got fired shortly after this. This was back in 1988. He also told me that lupus could not disable anyone, and then told me I had 5 years to live. bye-bye Sadly, this man is the only rheumy at one of the growing hospitals on the Eastside areas of Seattle.

The other problem I have had the same length of time is to have a delay in being able to get a word out. I don't stutter per se, but it is a delay in being able to get the word out. I've talked about it to my rheumy, had it a few times at our visits, but he didn't have a name for it, just added that I am not the only sle patient who has experienced it. As Lazylegs said, when the flare backs off, so does the symptom.

You are not alone, medical science just has not found all the variances of this disease.
Sally

I have been having prblems with my speech as well. It started with just not being able to find the words and gradually increased over time to stutttering and now some kind of gibberish. Not sure if that is because I keep from stuttering so I continue on in a seriously elongated sentence or what. I am really getting kind of freaked out about it lately. I have had bouts last most of the day were I couldn't speak anything intelligible and am growing quite concerned. Have been looking all over the net for someone similar with SLE. Sometimes I can talk just fine and others, its kind of a garbledy ****. or I will repeat the first few syllables over and over and over and over. I am so frusrtated I just want to cry. Hard to communicate with others when you are speaking several foreign laguages mixed into one. So when this happens I get out the white board until it gets better. Pain in the butt, but it helps. I see my rheumy this thurs. so I am hoping she can shed some light on this. Or send me to someone who can. So Glad I found other people to relate with.

During flares my speech is the same. If I focus just on what I am saying and nothing else I do better. I can't scan the area, try to read the other person's body language or move my hair from my face. There is also the additional problem of correcting what I am trying to say and forgetting what I am talking about. When it is someone I am familiar with I give them the topic prior to speaking so they can refresh my memory if needed. Funny thing is they sometimes forget the topic also and we just have a good laugh.

So far I haven't found a solution to the handwriting problem. I have an intention tremor and holding a pen sets it off. All my letters are shaky and sometimes my hand just shoots across the page. Whenever possible I type what I need but that is not always an option. It was very embarrassing to hand in my new patient paperwork the other day but it did give my rheumy a good idea of what I deal with on a day to day basis.

Take care,
Lazylegs

I am so glad that I came on the forum today - it has helped me feel better. I still want to cry though! I find that I struggle with my speech and I have a hard time trying to figure out the word I want to use even though I know the word. I have found myself stuttering more and more and it does bother me. I have in the past prided myself on my fluency of speech and now sometimes I feel like a bumbling idiot. I would have to say that it bothers me beause it is so obvious to everyone else over other symptoms. I do find that I have problems typing and formulating sentences. I seem to have lost the abilty to spell as well - or at least that is what spell check keeps telling me. )

The other thing I have noticed and I would love to know if anyone else has this issue - is that I am having problems with rapid movements in my eyes. I don't mean where the eyelid twitches, even though mine do from time-to-time, I mean that my eyes will involuntarily rapidly move from side to side. It will just be out of the blue and sometimes it happens throughout the day and sometimes I will go a while witout it happening. It has been going on for a couple years now, but I did not really think much about it. Now that I have the MCTD diagnosis I am starting to put pieces of what I believe to be the puzzle together, so I am curious to know if anyone else suffers from this symptom.

Thanks all.