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LAP12

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Hello,
First of all, thank you for all your expertise. I admire you all. I have been having some spasticity or dystonia in my tongue. It feels very stiff esp. at the base. I am also having twitching in my legs and have some weakness in my hand. The neurologist did an evaluation and said everything seemed fine to him. I requested an EMG which they did. The doctor doing the EMG tested my legs, feet, hands, arms, back and neck. He did not test my tongue. My question is would bulbar ALS show up using he back and neck only or is the tongue a necessary piece? Do you think I should request a follow up EMG with this component?
Thanks for you help in advance.
 

Zaphoon

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I believe that since the doctor performed the EMG on the areas where you've been having twitches and weakness (legs, hands) and the results of the test were good, you have nothing to worry about. If there were irregularities to be found, the EMG would have picked up on them.

I would say there is no need for another EMG.
 

LAP12

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Hi there,
First of all, thanks for your quick reply. You have no idea how nice that is. Even though my tongue feels stiff, you feel confident that Bulbar ALS would show up in the other areas? I hate to be the person that needs reconfirmation but I am mad at myself for not asking him to do that area. I also forgot to mention that I have had shortness of breath for about a year. I have asthma and my doctor feels like this symptom is because I am approx 35 lbs overweight and only 5'00. He feels that I have extra pressure on my diaphragm. My FEV is 72% at this time and dropped down from 78% 8 months ago. Thanks very much.
 

Zaphoon

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LAP12,

There are people on this forum that have experience I don't with bulbar issues. I will let them chime in here and see if your question can be answered.
 

rose

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I don't think that feeling of tongue stiffness would be a symptom of bulbar als, probably not even pseudo bulbar, but I really don't know. I've not ever felt that way.

I wish I could better answer your question, but I really don't know how spacity of the tongue would feel. My doctors have told me I have a miscoordination with swallowing, and I am getting to be more aware of it than I was when they first pointed it out to me, but problems I have moving the tongue are just weakness, the extra effort to try to push food around to eat, that sort of thing.

I do not understand what you mean by saying your tongue has dystonia, do you mean it is distorted looking when it lays relaxed in your mouth? Do you feel cramps in it? Are you unable to relax it? Have you gone to see and ENT doc?

If you can move your tongue side to side rapidly while in your mouth, if you can touch your back teeth with your tongue, tent your cheek with it, these sorts of tests are used to see if there are problems with tongue movement.

good luck to you :)
 

LAP12

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Thank you

HI Rose,
Thank you so much for your response. I can do all those things (tent, touch the back of my teeth, etc) but the back of my tongue seems stiff. It doesn't feel weak but just a little "stuck" and somewhat "swollen" in the back. I have some trouble speaking my S's but that is all. The tip/front of my tongue feels very normal and limber. My swallowing is fine. I have noticed scalloped edges around my tongue but I my tongue has always been somewhat big for my for my mouth. It seems normal size. Thanks again for your input.
 

Zaphoon

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I visited your profile page to see if your age was listed; alas, it was not. If you are having speech problems, have you considered the possibility of a small stroke? Perhaps you asthma could be a contributing factor.
 

LAP12

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Hi Zaphoon,
I am 40 yrs old. I just had an MRI done on Tuesday and haven't gotten the results yet. I will keep you posted and appreciate your perservence in trying to help me out.
Lee Ann
 

sukilou

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Hi Lee Ann, I just wanted to add something about your EMG. My tongue was needled by going through my neck, not the tongue directly. Maybe someone else can add info more specific to tongue testing than mine, but I did want to let you know about my tongue EMG test.
 

awieleba

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sukilou~

was that emg painful on your tongue through the neck?
 

sukilou

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April, I hardly felt it. The only spot that bothered me was on the chin, but even then the doc said "you didn't flinch," so I'm beginning to think that I'm already half dead:lol:.
 

BethU

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April ... what Lonna said. The only problem with going up to the tongue from under the chin was that they told me they were going to do that before they began any of the pokes ... then they did it last, so I spent the whole time worrying about it. It felt about the same as all the other sticks ... not fun, but not horrible.
 

Phil M

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I have bulbar, and I had cramps under my chin, and speech problems before any noticable tounge problems. I didn't have any twitching until almost a year after that.
 

Jennifer51

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I have pseudo bulbar and did not have the needle directly in my tongue, like others have said, it was done from under my chin, and for me that was the least painful of the lot. Symptoms slurred speach and extra swallowing, then talking much slower. Try wiggling your tongue from side to side as fast as you can, as already mentioned.
 
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