Trouble speaking

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sya15

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Re: Do these symptoms point to ALS?

Hi again.
My boyfriend states that he feels like someone is squeezing the back of his tongue. Anyone ever had this symptom? He is so fustrated! States how hard it is for him to talk.Takes so much effort. I feel soo bad wish there was something I could do. However still it is only speech affected(11mnths now) no difficulty swallowing occasional shortness of breath , fatigue decrease memory as well as puesdobulbar affect(increase laughter). Any one have some advice on how to help him through this? I am so stressed which is causing my colitus to flare up. I know its nothing compared to what he maybe facing however its making it difficult for me to be there for him cuz I'm always sick. I soo want to help him. Don't know what to do. Still wondering if ALs progresses this slowly with bulbar symptoms.
 
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Hi sya15

I noticed that you posted a question on your own visitor messages page.

I hope you don't mind but I copied your question into a new thread.

In the future, you'll have better luck getting an answer by opening up a new thread and posting your question there.

There are a number of options for speech synthesizer programs that will help your boyfriend be understood.

Etriloquist is a free program that will work with a PC.

E-triloquist Home

If your boyfriend has an iphone or ipad there are a number of speech apps proloquo2go ($200) and MyVoice (free).

There are probably speech apps for android devices too.

Unfortunately, if your boyfriend does have ALS, and I am hoping he doesn't, his speech problems will not improve and he will need to adapt to using some form of alternative communication.

Good luck
 
sya15,

My husband was diagnosed in 2006 and he had bulbar symptoms at the time of diagnosis, as well as limb onset (left hand).

Your boyfirend may be experiencing cramps or spasms and should get in touch with his neuro regarding this. They may be able to prescribe something to help provide relief.

Is the diagnosis still PBP?
 
Thanks for your advice. Yeah I'm still trying to figure out how to post on this site. I'm still hoping its not ALS . Its been almost a yr and no other symptoms really. His speech is effortable not slurred. No difficulty swallowing. All good signs:). If his speech gets worse I will look into that thanks. I wish you the best. I noticed you were diagnosed in 2005 and are still living life. Thats great! take care
 
yes still Psuedobulbarpalsy. He has had 2 EMG normal. Still only speech no other symptoms. Neuro can't give him any diagnosis. Still waiting only time will tell I guess. We go back to neuro in oct. then another EMG in Jan. In sept. It will be a year since onset of symptoms. I would think if ALS it would have progressed by now. Some other symptoms. However I'm not that educated in this horrible disease. Does ALS progress this slowly? Thanks for your support!
 
Hi.. I'm sorry to bother everyone again. I would like some insight. They are now testing my boyfriend for wilson disease secondary to low ceruloplasma however dr. states prob. unlikely that it is Wilson. She states that ALS and other related MND is still high on the list. Sept. will be a yr since speech onset. It is the only thing affected as of right now. He has had 2 emg both normal. Has anyone started with speech problems and has had no progression for a year. Does ALS progress this slowly? What other MND can it be? Thanks
 
I am not sure about this, but PLS can certainly affect speech, early in some people, but I have no idea if it would ever present with just speech issues. I spent some time last week with a chap who had ALS and he was barely able to make himself understood. Someone else with pls might know more and comment.
Aly
 
I just found an article stating that slowly progressive dysarthria can sometimes be the only symptom a person may have of pls. Only read the abstract, so not sure what they mean by slowly. Probably over years.
 
Thanks. Did you find the article online? I would like to read it. What is the difference between PLS and ALS?
 
Thanks. Did you find the article online? I would like to read it. What is the difference between PLS and ALS?

PLS is the form of motor neuron disease (MND) where only the upper motor neurons (in the motor cortex region of the brain) are affected. ALS is the form of MND in which both the UMNs in the brain and the lower motor neurons (LMNs), located in the spinal cord, are affected.

Because ALS affects both UMNs and LMNs, the LMN damage that it does is detectable using an EMG. There is no corresponding electrodiagnostic test for the UMN damage caused by PLS or ALS.

Once a patient has been initially diagnosed with PLS, the neuros will want to observe him/her, quite literally, for years to make sure that the diagnosis is correct and that they do not have a case of UMN-dominant ALS on their hands.

Be patient -- in cases of slow progression, not a lot seems to happen the first year, but the pace appears to pick up in the ensuing years as the disease spreads.

Good luck.
 
I have sent the link but it needs to be checked by the moderators. Just keep your eye out for it.
 
Thanks Trfogey for the input on PLS. I am very surprised we did not learn about this disease in school. Is it a rather new disease? I did do some reading online about it. It seems just like ALS its ruled in by exclusion. Thanks for all your support. I guess time will tell. As for right now he just has upper motor neuron involvement secondary to cranial nerves. So far all other signs of UMN are neg. No hypereflexia or spasticity and neg babinski . Just taking one day at a time and enjoying life. All my best to you Sya
 
Alyoop, Thanks for the link... Just curious how they determined that you might have PLS. Did they rule out ALS with you? I hope so. I did do some reading online about PLS. I looked back in a couple of my neurotext books but this disease was not in there. Strange? I had to take neuroscience so I know all the medical jargon. However I forgot all the spinal tracts going to be a nice review for me LOL. Thanks again keep me updated on your status. Wish you the best! Sya
 
They determine pls by clinical examination, EMG showing no LMN signs and exclusion of all else. They will not make the diagnosis until you have UMN signs for 3-4 years, without developing LMN signs.
Most doctors have never heard of it as ALS is rare and pls accounts for just 4% of MND's.
My neurologist had to look it up as he had never had a case!

Best wishes to you both and I hope you get some answers.
Aly
 
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