[talj]

Hi,

I was diagnosed with Lupus at the end of last year after 4 years of pretty poor health. So far I have avoided reading too much and I'm just taking each day as it comes. However, I wanted to ask for some advice.

In November 2007 I developed a very bad stutter, thats the best way I can describe it. I know the words I want to say but I just can't say them! At the time I was in what I now know to be a lupus flare and thankfully as things got easier my speech returned, though it has never gone back to normal.

Over the past month or so I have been struggling again and last weekend was diagnosed with pleurisy and pedicarditis. This might sound silly but it's the appearence of the speech problems again that is causing me the most upset. I can't find anything anywhere about lupus related speech problems and I was wondering if anyone here could point me in the right direction or if others experience anything similar?

Thanks in advance for your help

Natalya

 

[onetay]

Natalya,
I don't have problems with my speech but do have problems with my thoughts most of the time. I am not sure if this is lupus related but it might be since symptons are different for many people. I would do a search for speech problems related to diseases. It is very possible that it is related to another problem that you are having. I wish you the best with finding a better answer than mine. I hope you feel better soon.

 

[*~aurora~*]

I haven't been diagnosed yet, but when I'm severely anemic and/or having neuro symptoms (flares I guess), I have something similar what you're describing. it's less of a stutter for me and more of a total inability to formulate words or type correctly? but I can tell it's a pretty severe thing when it hits, so we may have the same thing just to different degrees. I hope you find answers soon, I know how miserable it can be to have communication problems even in the short term.

 

[talj]

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

 

[lazylegs]

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

 

[*~aurora~*]

glad I could help! here is a bit more info:

-it started last summer, mid July, when I started having menses every 10-14 days
-it also came with uncontrollable twitching/jerking of my limbs, neck, torso, etc. (like violent RLS of the body!)
-my neuro tested for MS and brain tumors, found only that my ferritin levels were super low.
-iron replacement totally got rid of the symptoms, at least until the next month comes
-now I only have it during periods of severe muscle weakness or other neuro symptoms... not sure why.

 

[cad]

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

 

[Pink Pearl]

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

 

[debatat]

Hi Natalya

I have the same thing, I ahve lupus and sticky blood. I have a kind of stutter, slurred speech, speech delay, cant find words, memeory loss and episodes of cant type words m- letters all wrong. Also weakness and myoclonic jerking down right side of body. Only explanation I have been given is it is neuro symptoms and my brain is affected.

I hate it and tend to hide away on days when am bad. I am trying to be brave and when I do see people who are friends they are very kind and understanding. I have to try not to get anxious with it as that makes it worse.

Thank you for posting about this as it really helps to know that others are in the same boat!!

Deb

 

[LolaLola]

I do get stupid speech problems sometimes. Even to the extent where nothing comes out and I am just making gestures with my hands. Tiredness or illness makes it much worse. Try not to worry. A Doctor recently told me that twenty minutes total quiet morning and evening improves this. He said there will be an improvement in 3 -4 months but meanwhile even writing notes before a phone call or whatever is a good help. (I don't know if this really will improve things but I am trying it as it can't hurt) It was a respected Doc. who told me this.

I would tell anyone not to worry too much about this as it is never as noticeable as we think. Easier said than done I know.
x Lola

 

[elle-co]

Hi Natalya,

I often trip over my words, lose words and slur.
I am sure i have a 5 second delay while my brain processes information before I figure out what I want to say, then when I open my mouth it all comes out wrong anyway :hehe:

Elle x

 

[smokerscat94]

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.

 

[debatat]

Hi Smokerscat and welcome to the site. You have replied to an old thread. You will get more replies if you start a thread of your own, maybe in the Introduce yourself forum. I am so sorry you are contending with this problem. Have you seen your gp or rheumy regarding this? I have had speech loss and problems myself and I know how vulnerable and isolated it can make you feel.

Take care

 

[lazylegs]

Hi Smokerscat,

You are not alone in this. When I am in a bad flare I have difficulty speaking. I will repeat the first part of the word over and over and may or may not get the rest out. The end of the sentence sometimes ends up one big slur. I will also be thinking of a word and another word beginning with the same letter will come out instead. It is very frustrating.

My neuro advised me to give the person I am speaking with a key word when I am having problems. That way if my mind blanks out they can try to remind me of the topic and I can try again. It has been helpful for me. What works best though is getting the disease under control.

Definitely let your rheumy know what is happening. You may need a neuro consult to help pinpoint the problem.

Take care,
Lazylegs

 

[MariaNicole]

Hello, everyone--this message strand is older now, but it is so helpful to know that I am not alone! I have been feeling like a bumbling idiot, I can't read out loud without stalling at words, just unable to get them out. I have never had anything like this in my whole life before! Is there anything anyone has done that will help?

Also, I know it is a totally different thing, but I have noticed that when I am writing, I have a similar brain hiccup--sometimes, my letters won't form right--I have too many lumps on my m before I realize it, or my hand just goes the wrong way and doesn't make the letter I am trying to write. Has anyone else experienced this?

Maria

 

[Monica3]

MariaNicole--
I too have the writing problems in addition to the speech issues. Often if I don't re-read what I have typed, it comes out sounding stupid or making no sense at all! Pre-diagnosis--I NEVER had this type of problem.
I have tested positive for the antiphospholipid antibodies too and I am scheduled to have an MRI of my brain next week to look for neurological abnormalities. Not sure what the treatment is if neurological problems are found, but I would love to regain my intelligence!

Have you been tested for APS? It might be worth asking your rheumy about it!
Hang in there--you are NOT ALONE!

Monica

 

[lazylegs]

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

 

[Janet_M]

I was diagnosed with SLE at the end of Oct. 2010 and it never really occured to me that some of the problems that I've had might be lupus related and not just ADHD related. I'm incredibly forgetful and totally rely on writing down lists. That has helped with my memory loss. I just could never make sense of the problems with stuttering that I have on occasions and the inability to come up with certain words at times when I'm trying to explain something. I get so frustrated and I also use a lot of hand gestures in an effort to get across what I'm trying to say.

 

[Kelzbelz]

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.

 

[Jjude]

I am having a similar problem at the moment. I often lose a word, or get stuck on the first sound in a word. This is since I had what they say may be a TIA but is better on some days than others. Has knocked my confidence a bit, and sure people at work are noticing
Having problems with typing the wrong word too. (getting similar words mixed up, like "word" and "work". Took ages to do this cos keep noticing mistakes!

Jjude