Official poll results

[dalvin]

No, the emgs were all done on limbs and spine. Was pretty obvious tho for the bulbar, ie. chocking, speech etc. actually aspirated back in 06 and lost six months work over it. Now have peg and take all nutrion in via tube. Swallowing had gotten to the point of chocking with each bite and no longer wanted to eat. My neuro is supposed to be one of the best in Virginia and is head of the neurology dept at VCU

 

[olly]

Dalvin I would say not to commit to the idea that its als given the long slow progression.
Eventually some pls patients with bulbar/eating problems do need a peg.
Me its more chewing with jaw problems and weak chewing muscles (too tired to remember name),when bad I go on a liquid diet for weeks or months so maybe eventually I too will need a peg.
Did the limb emg's show any lmn involvement?

 

[dalvin]

He said they showed a myopia. The VA hospital recently determined ALS. Got the paper work yesterday with their confirmation. On the bright side, I'm not giving up yet, there's a lot of things I can't do but I refuse to go quietly.

 

[dalvin]

He is planning to do another emg in the next month or two. I think their view is that it's progressing to fast now for pls. The VA diagnosis basically means that my medical bills will be covered as. Well as medical equipment. The large disability check from them doesn't hurt either. Either way, my thought is that it is what it is, crying about it won't change things, the only thing whining about it will do is drive whatever friends I have away.

 

[Zaphoon]

Good Work Olly!

 

[affected]

Thanks Olly, you explain things so well, I always find your posts so interesting to read!

I certainly hope you remain nice and slow progressing.

Dalvin, I'm sorry to hear how your progression has changed and they have said now ALS.

I read here once someone said - ALS isn't a terminal disease. LIFE is a terminal disease. ALS is just an accelerator.

 

[tdamess]

I know there is a good amount of pals with thyroid issues but am wondering if any pals had their thyroid removed

 

[AKmom]

Awesome job Caroline! Very interesting results.

 

[Barbie]

I have found this poll very interesting with regards to my husband. He has a diagnosis of ALS, but he is definitely in the minority with his longevity. He also progressed rapidly in the beginning and slowed down to almost a crawl sometimes. the neuro said last time we were there that he must be UMN dominant and on the spectrum which is slower I guess. but he does have LMN symptoms too, so I guess that is the ALS.

So many times I have said to myself is this really ALS? but what else could it be.

 

[Clearwater AL]

This may not be the place for this, maybe better suited in the joke section. Don’t think it’s related to PLS but it’s weird. Ok, I have never been able to sit on the commode very long before my feet would fall asleep and when I’d get up the prickling sensation would be nearly unbearable. Often sitting sideways in my office chair at my desk I’d put my feet up on a foot stool with my legs crossed and my left foot would go to sleep and the prickling sensation would be awesome. But… now when my feet fall asleep they are just numb. No prickling sensation anymore. ?

 

[IhavePLS]

Hi Tillie,

I'd like to follow on to your initial postings concerning the nature of PLS. It is true that most experts believe PLS to be a variant of ALS -- certainly, this position holds true of Johns Hopkins, the NIH, and others (please see the following (be sure to scroll down):

https://sites.google.com/site/veteranswithpls/

Kind regards,

Mike