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dand_75

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OK, I read today thAT SOME OF YOU HAD SLURRED SPEACH BUT NOBODY COULD HEAR IT BUT YOU. hOW IS THAT POSSIBLE? i KEEP ASKING MY MOTHER AND WIFE IF THEY NOTICE ANYTHING DIFFERENT ABOUT MY SPEECH AND THEY GET MAD AND SAY OF COURSE NOT! i FEEL FUNNY IN MY MOUTH WHEN i SAY THINGS LIKE "SHOWER" OR SOMETHING LIKE IT. Damn caps lock! End of my tongue will feel mildly numb at times and when I stick my tongue way out I do see tine twitches that i can't feel in it but after a sec they go away. Any answers. I went through an ALS scare about 5-7 years ago and don't want to do it again!
 

CindyM

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Hi Dan- I think people close to you might not hear the slurred speach as their ear hears the way they are accomstomed to hearing you talk. If -big If-it gets worse eventually they will hear it. You say you went through a scare a few years back so you probably know how difficult it is to DX a condition for which there are no tests. i am sorry your symptoms are kicking in again. Cindy
 

patricia1

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dand_75 said:
OK, I read today thAT SOME OF YOU HAD SLURRED SPEACH BUT NOBODY COULD HEAR IT BUT YOU. hOW IS THAT POSSIBLE? i KEEP ASKING MY MOTHER AND WIFE IF THEY NOTICE ANYTHING DIFFERENT ABOUT MY SPEECH AND THEY GET MAD AND SAY OF COURSE NOT! i FEEL FUNNY IN MY MOUTH WHEN i SAY THINGS LIKE "SHOWER" OR SOMETHING LIKE IT. Damn caps lock! End of my tongue will feel mildly numb at times and when I stick my tongue way out I do see tine twitches that i can't feel in it but after a sec they go away. Any answers. I went through an ALS scare about 5-7 years ago and don't want to do it again!
I taped my voice and it diffently was slurred My family said no I think they didnt want to scare me or themselves Pat
 

fla-cherie

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Hi Dan: I'm sorry you're experiencing slurred speech, but it may be so subtle you're the only one who can tell now. I'm 60 & had bulbar onset/left footdrop Feb '05 with tongue swelling, raspy voice; by April '05 voice fading in & out and foot dragging, but the dr couldn't see it--she said tongue problems were acid reflux which I never had. As spring/summer passed, twitching, etc. ramped up, but neuro first thought stroke. Rec'd ALS diagnosed Feb '06.

However, in the year or so prior to Feb '05, the thing that was wierd was, when calling the cat, I could NOT say "Kitty, Kitty" normally anymore! My tongue was a little sore, too. I distinctly remember this happening, but thought it was due to dental problems. I now believe these were the first symptoms. Try hollering this or other phrases repeatedly and see what happens. It's very important to keep good chronological records of all these things to take to doctors; my SSDI was based on health journal notes I supplied during diagnosed testing rounds.

I will pray this is not ALS for you. Cherie
 

guwainengle

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Does your tounge twitch when it is at rest inside your mouth or when you stick it out-- my tounge is very active when I stick it out-- but relaxed it seems like nothing-- Also-- do you ever get the throat twitch?-- I usually get them at nioght when I am going to bed--

G
 

dand_75

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No throat twitches yet. My tongue doesn't hurt but at times my throat does and it feels like its from overuse or something. I went through this back in 2000-2002 but not with these symptoms. I had 3 emgs and all were clear. My neuro trained in houston under what he called the ALS guru for one year doiunig nothing but emgs on als pts. I ended up having nothing and i hope this is too. My wife and mother are fed up with me but the more I read on here the more I seem to find symptoms that i have. I have asked people at work if i slur and they all say no. Same with my family. Patricias posts really scare me the most, though. No offense. She has had almost all of my symptoms. My voice is rough soundinfg today but it may just be tired/sinus or something. Also when i look down my lower jaw seems to want to fall forward and it FEELS like it takes an unusual amount of energy to pull it back in. My mouth is still closed too. Who kbnows? I trust my neuro but it has been 5 years ago. I know one clean emg doesn't mean immunity. Is 31 young for the disease? My grandfather was one of 13 children and he had a brother and a sister die from it. He died at 80 from an infection. My mind is firing like a spark plug but the thought of leaving my babies in too much to bear. Also I am viciously claustrophibic and the thought of paralysis is nauseating and panic inducing. Thanks for letting me vent. I want to go back to my neuro but frankly I'm embarrassed. I told him last timew I wouldn't be back unless I was dragging a leg or something. I'm psycho, I know!
 

Jamiet

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You need to have an EMG of the caracnythroid muscles (bulbar) done. They will check your vocal cords, neck, tongue, cheek, etc.

Who is your doctor? I may be looking for a second opionion to do another EMG, can you PM me the name of the doctor that you used. I want an expert in EMG's.

Stick around, were here to help.


PS: I'm 32, i'm still not diagnosed with anything.


Best Regards,

Jamie
S
 

brooksea

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dand,

Don't be embarrassed to go back to the neuro. A lot of times the neuro will say it isn't ALS and then tell you to come back in 3 or 6 months so they can check again. From what I've read on this forum and others, ALS can be hard to diagnosed. So if you feel you are driving yourself crazy, it is better to just go and get tested again rather tan go insane about it. After all he is getting paid for it!
 

CindyM

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Hi Dan-
My grandfather was one of 13 children and he had a brother and a sister die from it.
Maybe you should ask for the SOD 1 gene test. Just to put your mind at ease. Cindy
 

fla-cherie

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Hi Jamiet: I'm here in the FLA Panhandle on the Gulf Coast and where I was sent for my second opinion, I would highly recommend if no ALS clinics nearer to you in Lafayette. I went to UAB in Birmingham and had three hours of EMGs and nerve conduction tests that were so much more thorough and intense than my neuro did here. The consulting dr there was Shin J. Oh, Prof of Neurology, and he has a very competent and compassionate staff. After these tests were complete, I received diagnosed, and 3 weeks later when muscle biopsy results were in, Dr Oh called me re: specific motoor neurons involved. Hope you find someplace to get the better EMGs. Cherie
 

Jamiet

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The thing is, my EMG was done at Houston Methodist ALS clinic. I had one in Octboer 06 & One in Jan 2007.

The one in oct, he saw somethingin my left quad. I heard the ticking. Then, i asked him because i knew it wasn't supposed to sound like that, if he saw something... All he told me is that......there was no weakness "persay".....that was a "persay".

Then, the one in january.... the EMG expert did my EMG and NCV in about all of 10 minutes. he told me it was abnormal. then, he never did check my tongue, my paraspinals, nothing in the face or bulbar region. Only my hand, arm, leg and foot.

he told me i had very very irritated muscles and it was abnormal. Then, he was like a kid in a candy store with me on the NCV. he kept shocking me and there was an afterdischarge after like 10 shocks....well, i guess if i stick your damn hand in a socket like 10 times, you will start aftershocking too huh?

All in all, i don't think my last EMG was adequate, as the guy stopped everything when he got this afterdischarge on the NCV. THen, the neuro dismisses it as anxiety. Interesting, one neuro tells me it's an abnormal EMG, then, the next says it's abnormal because of anxiety. Yes...anxiety, no how does anxiety make an emg anbormal, do you think it could be ant in my pants or something like that.

What idiots. I'm fed up with careless doctors (god complexes).
 

patricia1

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I know how you feel The first EMG I had was done by a Doctor that was so mean He wouldnt answer any of my questions and kept sticking needles in me and making me move the part the needlle was in and the pain was terrible. He kept saying you can so it my way or leave So may husband almost clocked him and told him to disconnect me.And we reported him to the AMA and the insurance co and the referring doctor. Since then I have had many EMG and they are not painful at all Just mildly uncomfortable. By the way that EMG was Normal. and so were the others. I still think they are learning about ALS ,and still havent a clue. And having seen at least eight neuros since my diagnosed I found they are all alittle Nuts LOL PAt
 

robc

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patricia1 said:
I know how you feel The first EMG I had was done by a Doctor that was so mean He wouldnt answer any of my questions and kept sticking needles in me and making me move the part the needlle was in and the pain was terrible. He kept saying you can so it my way or leave So may husband almost clocked him and told him to disconnect me.And we reported him to the AMA and the insurance co and the referring doctor. Since then I have had many EMG and they are not painful at all Just mildly uncomfortable. By the way that EMG was Normal. and so were the others. I still think they are learning about ALS ,and still havent a clue. And having seen at least eight neuros since my diagnosed I found they are all alittle Nuts LOL PAt

Hi Patricia,

The 3 neuros I've seen so far have given me the impression that lower motor neuron involvement would show up on an EMG. So far most of my issues are spasticity/cramps/weakness (arms/legs) & fasciculations (all over) - some atrophy on a biopsy but I don't notice any visually.

I have jaw jerk too which I think can be related to psuedobulbar stuff, but I dont have any speech swallowing issues at this point.

What lead your neuro to give an ALS diagnosed with normal EMGs? Seems weird.. or am I misinformed about EMGs?

Thanks!

-Rob
 

robc

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Annmarie,

Yep - my neuros said the same thing, no ALS with normal EMG. They're assuming upper motor neuron disease only at this point & the plan is to repeat EMGs. The weird thing is I had slightly EMGs back in May '06 & Jan '07, showing some small motor unit potentials & increased turns. This was a very quick EMG at Kaiser though. Recent EMG (this month) at the Cleveland Clinic was much more thorough and was completely normal. I don't know what to make of the denervation/reinnervation & fiber type grouping in my biopsy along with the fasciculations but normal EMG. It just doesn't make sense to me.

Did you have a muscle biopsy? If so, what did it show?

Thanks!

-Rob
 

robc

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Annmarie,

My strength is pretty good.. 5/5 in all extremeties except my left hand was slightly weak. My short burst strength is generally good I just can't sustain it. I had a treadmill test & was fully anerobic within 3 minutes of pretty slow speed (2.5mph). I can still pick up things that are pretty heavy, I just can't carry them for long. I can still walk, but my legs tire really easily & start to ache. I can do 30 minutes of minor excercise with a physical therapist but then I need to go to sleep right afterwards & I have lots of discomfort & cramps the next day I think from increased spasticity.

I'm not sure if I have atrophy or not.. I tend to think not - my arms are pretty thin but they've always been on the thin side .. I think it's more just weight loss from diet change & possibly atrophy from reduced use.

I am going to look into starting some sort of pain medication again so that I can tolerate more excercise. To make things more complicated, I apparently also have some sort of metabolic muscle disease which is separate and in addition to the motor neuron disease. This was confirmed through a lactic acid excercise test where my lactic acid levels only elevated to about half the level they should have. So I don't know how much of my weakness & pain is due to the metabolic disease vs the motor neuron disease. I tend to think it's mostly the motor neuron disease since I had had pain with excercise for many years that didn't feel like what I feel now.
 
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