[Raglet]

hi there

My usual speech problems relate to weakness of my tongue and left cheek, which basically makes my speech pretty naff. But not too bad - a lot better than it was.

But, that particular problem is with a tongue that can't physically do the job it needs to do, but I still understand what I am meant to be doing. There are all sorts of movements I can't make with my tongue but I am used to that. This is a permanent problem, just part of what makes me me if you know what I mean.

This new problem is different, and only happens sometimes. It started with this whole flare that started a couple of months ago, and is persisting. It's more about me not understanding the sound I need to make to complete a word. I start out ok, and get the first sound of the word but then it all just comes to bits and I don't know how to make the next sound, but the sound is still coming out of my mouth and it just turns into the sort of garbled unformed sound that can best be described as the sort of sound that someone who has had a really bad stroke that has affected their speech.

It is more about me not knowing how to do it, rather than talking with weak muscles. It is really weird, and very annoying when it happens. I have learnt to just push through it and keep speaking as I can usually go on talking normally.

Just weird, I would like to know what this is, so I can start reading up about it. I am wondering if my speech is becoming apraxic. I am apraxic anyway in terms of movement (makes neuro exams a nightmare unless it's a doc who understands apraxia), but this has the same crazy inconsistant feeling that my apraxia has.

anyway, just burbling along here about something that is a little annoying just now - I think the best thing I can do is just ignore it and keep talking, not much else I can do really

cheers

raglet

 

[wifajax]

Raglet -

I can't offer any wisdom at the moment. Your situation is rather unique!

You always amaze me with your positive attitude, even in light of frustrating, annoying and debilitating issues. You are an inspiration to so many of us!

I hope you can get either some answers or some relief very soon.

Terri

 

[Katharine]

Hi Raglet,

I only wish we could help as you so often help us. I think on this one you know more than the lot of us joined together. I'm sorry that you've got so much happening all at once, it's very grrrrrrrrrr, aarrrrrgggghhhh, pffffffffftttt altogether!!

I hope you like chocolate, or at least the virtual stuff as I shall be sending a plane load of lovely virtual Belgian chocolate your way in the hope that it cures all

Katharine

 

[lazylegs]

Hi Raglet,

This may not be the same thing at all. At the worst of my dysarthria I would say a word and by the end it was such a slur that it was unrecognizable. I might as well have been saying blah, blah, blah. Sometimes when I tried it again it came out right. Other times I had to give up and choose an alternative word.

There were also times that the word was in my head and the message just didn't go to my tongue to say it. It was just like a stroke patient. The doctor explained it was due to the damage I had in the speech area of the brain.

Fortunately the Rituxan has helped in both areas. When the speech problems start creeping back real bad I know it is getting to be time to redose.

Take care,
Lazylegs

 

[IBDOROTHY]

i am so sorry to hear about your difficulties. at times my tongue will swell which makes talking difficult. i do however suffer with the mind mouth connection but mine is that i know what i want to say but cant get the words out of my mouth. it is like i am having the conversation in my head but it wont go 'vocal'. when i flare really, really bad, it does affect my writing too. i can see the letter that i want to write down but i am unable to duplicate what i see on paper or in my head. this disease(s) has more twists and turns - it is a wonder any of us can keep any of it straight. enjoy that virtual chocolate

 

[Maia]

Just wondering if you get routine follow up MRI's to track the progress of the lupus attacking the various parts of your brain? This might be able to identify if it is attacking a new area and causing the problem so you may know what is causing it a little more clearly, but as it's clear you are already doing everything you can to treat it... you may opt not to do this. Sometimes it feels better just putting your head in the sand...

 

[IBDOROTHY]

Just wondering if you get routine follow up MRI's to track the progress of the lupus attacking the various parts of your brain? This might be able to identify if it is attacking a new area and causing the problem so you may know what is causing it a little more clearly, but as it's clear you are already doing everything you can to treat it... you may opt not to do this. Sometimes it feels better just putting your head in the sand...

yes, i have and the drs are still clueless. the last bout i had was a week after my first rituxan infusion and an with and without contrast mri was done the day i notified the dr but was told everything checked out. i have been told they have found disturbances in the frontal and temporal lobe areas but nothing that can be labeled as 'something'. i have had horrible fevers, headaches and could actually feel lumps, like swelled veins on my head. my sleep is so messed up and lycria/150mg, lunesta/9mg and rozerum/8mg can maybe put me to sleep for 21/2 hrs or so and sometimes has no effect at all and i will go for 40 hrs without sleep. i have had 2 sleep studies and i do not have sleep apena but on monday will see what the 2nd one shows. i think the sleep is the most maddening part for me right now. it is as if i can actually lay in bed and feel energy running through my veins. i have tried to figure it out and think my problems are attacking my auto. nervous system which is made up of the parasympt and sympt nervous system but my para. part is not sharing time with the sympt part causing my body to not realize that i should be tired. oh boy when i crash it takes days to recover but sometimes it is almost better to have all the 'bad' energy than the constant fatigue if that makes any sense.

 

[LoopyLoo]

No expert advice from me, far from it. Just know that I'm thinking about you and hope to goodness things improve for you soon!

 

[Raglet]

the thing that I am finding weird about this is the lack of co-ordination of it - and the way that I am going on making a sound while my mouth and tongue struggle to physically shape the word. Other time if I struggle to say a word, I stop making a sound but I just don't seem to turn the sound off while I am struggling to shape the word, which sounds so weird. But I do find that if I have the confidence to just keep on going then other people don't seem to take any notice of it.

From what I read of speech apraxia it seems to fit - and I alrady have motor apraxia so maybe that is what it is. And it is definitely about the physical production of the word rather than the mind speech connection - I have those problems from time to time as well, but it just feels different. When the mind speech connection goes with me, I just come to a full stop and don't keep making a noise (ie I have the remarkable good sense to shut up hahaha). With this I am still making this weird unformed noise while I am trying to make the word with my mouth.

I remember when I was in a stroke ward (don't ya just love where you end up with lupus) the woman in the next bed has speech apraxia - if someone asked her to stick out her tongue she would do something totally different with it as she didn't know how to make the movement. It sort of feels like that, a sort of not knowing how to make the movement, though on a much milder level than that poor woman.


this is an article about apraxia's if anyone is interested. It has a lot of stuff in it

Table of Contents (click to jump to sections)
What is Apraxia?
Is there any treatment?
What is the prognosis?
What research is being done?

Organizations

What is Apraxia?
Apraxia (called "dyspraxia" if mild) is a neurological disorder characterized by loss of the ability to execute or carry out skilled movements and gestures, despite having the desire and the physical ability to perform them. Apraxia results from dysfunction of the cerebral hemispheres of the brain, especially the parietal lobe, and can arise from many diseases or damage to the brain.

There are several kinds of apraxia, which may occur alone or together. The most common is buccofacial or orofacial apraxia, which causes the inability to carry out facial movements on command such as licking lips, whistling, coughing, or winking. Other types of apraxia include limb-kinetic apraxia (the inability to make fine, precise movements with an arm or leg), ideomotor apraxia (the inability to make the proper movement in response to a verbal command), ideational apraxia (the inability to coordinate activities with multiple, sequential movements, such as dressing, eating, and bathing), verbal apraxia (difficulty coordinating mouth and speech movements), constructional apraxia (the inability to copy, draw, or construct simple figures), and oculomotor apraxia (difficulty moving the eyes on command). Apraxia may be accompanied by a language disorder called aphasia. Corticobasal ganglionic degeneration is a disease that causes a variety of types of apraxia, especially in elderly adult.

Is there any treatment?
Generally, treatment for individuals with apraxia includes physical, speech, or occupational therapy. If apraxia is a symptom of another disorder, the underlying disorder should be treated.


What is the prognosis?
The prognosis for individuals with apraxia varies and depends partly on the underlying cause. Some individuals improve significantly while others may show very little improvement


What research is being done?
The NINDS supports research on movement disorders and conditions such as apraxia. The goals of this research are to increase scientific understanding of these disorders, and to find ways to prevent, treat, and cure them

http://www.ninds.nih.gov/disorders/apraxia/apraxia.htm

I have ideomotor apraxia - if I want to make a particular movement I can (for example scratch my nose) but if someone asks me to do it it becomes very difficult.

As a fairly extreme example, I was one day standing in the middle of a dirt road on a raspberry farm. Someone was coming down the hill on a push bike yelling 'I haven't got any brakes'. I was right in the firing line, so everyone started yelling at me to get out the way (a no brainer really). Except of course I couldn't, I didn't know how to get out of the way, because it is very difficult for me to follow directions from other people about moving my body. Of course if there had been anyone there who knew about my apraxia they would have just yanked me out of the way and that would have been that. Inevitably the bike hit me - no real damage done to either of us beyond both of us hitting the dust and getting a few bruises, but everyone thought I was really strange. I guess I was (still am actually hahaha).

If I want to do something it is no problem, I can just do it. Makes it very difficult to do a neurological exam though, as they ask me to do stuff which I then struggle to do though I could do it if they hadn't asked and I just wanted to myself (provided it wasn't trying to move the bits of me that don't work due to nerve damage). So if I want to scratch my nose I can, but if you ask me to it can be really difficult.

very weird. After I was dx with apraxia, a whole lot about my body started making sense.

I seem to have wandered off the topic of speech problems ..... oh well, sort of related I think.

chocolate is DEFINTELY appreciated along with any well wishes

thanks to you all

raglet

 

[Joandublin]

Hi Raglet

I just wanted to take a minute before I head off to work to send you those much needed chocs.....

I hope this latest development can be reversed but it sounds like its going to be a long road of therapy and hard work if thats the case:hugbetter: I truly hope the current round of treatments might reverse or at least improve it. It must be truly frightening.

Much love and hugs to you and strength for the road ahead (keep out of the way of runaway bikes...!)

Joan:rose:

 

[halfpintfl]

Raglet, you dear, dear thing. You mean so very much to all of us. After I sample
(just a few) of those choclates, I am sending you the biggest batch of hugh that you have ever seen. I do hope that you can work this latest problem out with the
physical therapy. You are so very dear to all of us, please keep popsting and keep us up-dated. Blessings, luv, and hugs.

 

[IBDOROTHY]

thanks loopyloo and raglet for the information. wow that is alot of different issues that i never even connected 'not' being able to do 'that' with the disease. i guess that is why i had it at various times and degrees for 8 yrs before i was diagnosed with the sle/mctd and the 'others'. i am
having the eye issues right now and just returned from the retina specialist to make sure nothing is being caused by the plaquenil. when i flare my eyes will remain dilated for days on end. i am looking forward to reading the information once i am vision returns to 'normal'... i think i did normal once but it was a long time ago

 

[JoD]

You may want to start looking into AAC. If Steven Hawkins can use one, I think the Lupus Board genius would have no problem.
http://aac.unl.edu/yaack/c3.html

I have been having problems with correctly pronouncing words. I think my tongue works ok.The words are multisyllable words
For me it is like I know the word I want to say.. I can hear the correct pronounciation in my mind but when I try to say it I literally can't figure out how to form the sound of the second or third syllable.
Joanne

 

[lazylegs]

Hi Raglet,

My speech difficulty is ataxic. The tongue, lips, larnyx, whatever don't always continue to move, move soon enough or in unison to make the sound I want so it comes out slurred or mutilated. My nuero explained that the messages from the brain are sent and delayed so the brain sends it again and the different parts end up in a ricochet action. Usually I attempt the word again, that is if I can remember at that point what I was trying to say. If it is really important I have learned to tell the person with one or two words what the subject matter is so they can remind me if I forget. It sounds different than your problem.

Take care,
Lazylegs

 

[acard]

Raglet,:hug: As soon as I read your first post-it sounded like a typical case of speech apraxia.
Your next step is to see a speech pathologist. This is what I did prior to retiring, but I worked with the little ones 3 yr olds-5thgraders regular ed and special ed. There are so many exercises you can do and I know if anyone can tackle this it will be you.
You obviuosly are so on top of it and that is the best place to be.

I want to tell you I am sorry, but I know you can get through this too!!!!


Hugs,
Becca

ps I have transient aphasia since the seizures started in 12-2007 and any speech issue is frustrating!!

 

[LBH]

I get the slurred speech

I get spells where I get slurred speech amost like a stroke patient would get but mine is rather mild. But it comes and goes and is somewhat annoying. Try to say something to suddenly have a slurred voice and not be able to focus on what I am saying. It is weird feeling to say the least! Feel for you Raglet!

 

[smile2007]

Speech Problems Tongue Problems

Hello All,

It's been a long time since i been on. I wont bore you with my stories for now. But Raglet, as Lupus patients are more prone to strokes, we should never take any speech problems lightly. Particularly when there is tongue involvement

this is from the stroke association uk website:

F Facial weakness: Can the person smile? Has their mouth or an eye drooped?
A Arm weakness: Can the person raise both arms?
S Speech problems: Can the person speak clearly and understand what you say?
T Test these symptoms.

One of the tests carried out is to ask the patient to stick their tongue out. if there is any asymetry, this is a sign of stroke and TIA.

This is not to panic anyone, but to be aware of all these symptoms, actually, I saved my grannie's life recently, just from being aware.

Take it easy, and take good care of yourself

love to you,

smile
xxx

 

[Raglet]

hi Smile

This is definitely not a stroke, rather it is a progression of my brainstem problems which do indeed mimic stroke. When all this started happening some years ago I was fully evaluated for stroke, and it was ruled out. Lupus can mimic stroke as well, which is what is happening in my case. My tongue has been deviated for many years etc etc.

Good point though, and if I hadn't already had stroke ruled out then it would be important to do so now.

cheers

raglet

 

[Jmaca]

I was going to ask if you've seen a speech and language pathologist too. I'm a special ed teacher, and it sure sounds like apraxia to me too. My sister, who has MS, has just started working with a SPL for her apraxia. Does your medical coverage "down under" allow for that kind of therapy? The specialist would know fairly easily if that's what it is or if it's something else.

 

[dudley]

Raglet,

I wish I had words of wisdom like you have had so many times for me. I did go through a sleep study and I flunked. Study showed that I only went into stage 3-4 for four mins, rest of the time it should that I was awake. I was sleeping but it was so shallow that it did not record it.

The docs tried me on traditional sleep meds but they had the reverse reaction. On one I cleaned my house, They said to take 2. Cleaned my house and did laundry. They tried a drug Seroquel that I believe is for people that are bi polar (which I am not) and it works. They never redid the sleep study however. The only side effect that I have is weight gain. I feel that I am getting into the deep sleep because my fibro is not as bad.

I do have a motion disorder and CNS lupus. I have a lot of spasms on a bad day. I even might be writing and all of a sounden I will through a pen across the room. There are times that when I want to say a word I just can't form it in my mouth so I just subsitute it with another (however, I do the same thing when I try to spell something.) It never occured to me that it could be lupus related.

Sending you thoughts of chocolate. Do you prefer milk or dark chocolate?

Elaine