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LinCan

Active member
Joined
Sep 25, 2012
Messages
67
Reason
PALS
Diagnosis
08/2013
Country
CA
State
Ontario
City
Sault Ste. Marie
Hello everyone. I haven't posted for a while, but have been reading and learning. I really appreciate all the kind knowledgable people who contribute.
I was diagnosed as probably PLs, maybe Hsp last fall with UMN symptoms in legs, signs of increased reflexivity in arms, clear MRIs, and a clear EMG in Oct. 2012. I find my spasticity in legs is worse after sleeping and that does not surprise me. What is starting to worry me is that when I awake with a dry mouth and try to swallow, my jaw kind of jerks or shudders like a sort of "jaw clonus". Does this mean symptoms are moving to bulbar region? if so, this seems to be pretty fast progression for PLS. (Symptoms started I think around3 years ago.)

Any thoughts or advice would be greatly appreciated. I have an appointment with an MND specialist in London ON in April, and will have another EMG then. It is a seven-hour journey, but will be worth it. I'm just trying to stay as calm as can be till then.

Thank you again.
 
London is a GREAT place, from what I've heard.

Wishing I had advice for you or an answer to your jaw issues. You may want to jot down a chronological list of all of your symptoms. That way you won't forget to mention anything and the doctor may find it useful as well.

I can only offer you my very best wishes for a good outcome in April. Please let us know how it goes for you.
 
Thank you, Elaine, that is a great suggestion to make a list of symptoms.
I hope things are going well for you and your family. You are always so kind to others on the forum.
Linda
 
I don't think so, Linda. At least if there are no other issues in that area.
 
Hi, LinCan! MY symptoms of PLS started in a Bulbar way as opposed to any other way although I use a cane and walker now. First I started to slurr a word here or there......then I had a little dysphasia (trouble swallowing.....actually it was more of an occasional throat spasm...of sorts.....I CAN STILL actually eat anything right now (my diagnosis was in 2005). I went to a speech pathologist who told me HOW to speak in spite of my sounding kinda drunk....I also get very nasal sounding when I talk too long. I don't, however, have a dry mouth....I tend to have more saliva than normal....I usually sleep with a fresh tissue under my cheek in case I drool. My neuro told me my prognosis was good and to take Rilutek (Riluzole). My PLS was diagnosed at Johns Hopkins in Baltimore, Md.
 
Thank you, Noyme and DBowman for your replies, and reassurance. I haven't been prescribed anything yet; baclofen was suggested, but has me concerned about a greater risk for falls, as my balance is really bad.

Linda
 
I have been experiencing jaw problems. Its like when you get cold and your teeth chatter.
 
I have Bulbar PLS. My initial symptoms were mostly related to speech and my mouth. One doctor thought I may have TMJ. I would clench my jaw at night and would wake up with a sore jaw. I also had weird gum pain. As the PLS progressed my jaw/gum problems dissipated.
 
Thank you for responding. Well we survived the road trip - through a spring storm. Nothing much new to report. Good news is the EMG was still " normal"; bad news is the neurologist said she still can't take ALS off the table for a year or two. I'm supposed to go back in August for another EMG and the day at the clinic. Right now I'm trying to decide whether to try baclofen or not and getting ready to move.
 
Hi LinCan.....The only thing I can add is basically what other people have mentioned. I was diagnosed in early 2008 after all the test we all go through. Mine started with my left leg/foot drop and tripping (it is now in both). Also, now minor problems with my arms and mainly my hands. I do need help cutting some meat or opening some packages (like a candy wrapper or something). As far as my mouth area, I do have the speech problem of sounding drunk when I am having a conversation with someone. And the worst part is I can hear how I sound when I'm talking and I just know what the other person is thinking. As far as eatting, I can still eat everything, it just takes me a lot longer to finish a meal (my wife has everything cleaned up and the dishes done by the time I am finished). My lastest problem the last 3 to 4 weeks has been with pills. I seem to have a problem getting myself to swallow. I get them in my mouth, take a drink, and keep trying to get myself to swallow. Instead I just keep moving them around and finally something tells me to swallow. It is not a big deal, but sometimes I choke trying and everything comes out all over the table or walls (my wife just loves cleaning the coffee off the wall). So I don't know if I have "jaw" or "throat muscle" problems?
 
Hi Kevin. This disease is really difficult sometimes. I assume that your diagnosis is PLS with the 2008 start of symptoms? The neuro thinks mine may have started 2009, but is not taking ALS off the table, so I keep checking to see if there is any noticeable atrophy. I never used to be paranoid, but this disease kind of heads you in that direction. My speech is still pretty much O.K., and I can still swallow. I do choke slightly from time to time, and that has me worried as well. I guess the most troubling aspect to me is that you can't tell how soon things are going to progress, and you keep adapting, and wondering if more weakness is a sign of progression or just a "bad" day. Anyway, I'm really trying to take one day at a time and concentrate on what I can do as others have suggested, but it can be a challenge!
Wishing you many good days,
Linda
 
sorry Kevin, I just noticed your diagnosis is PLS!
 
sorry Kevin, I just noticed your diagnosis is PLS!

I first noticed my symptoms really started in the 2006-2007 winter with problems walking up and down steps at my daughters basketball games and very stiff in cold weather. Then during the summer of 2007 I was having trouble at the auto body shop I worked at. I was tripping over small things like air hoses or small parts on the floor, also when I would bend down to look at a car I would tip over or have a hard time getting up. By the fall of 2007 I really knew something was wrong as it got colder. It was the first year my son was old enough to hunt with me, and I found I could no long walk through the woods and the weather made it worse. That's the basics of how mine started, it's amazing how when you look back you can remember small things that you didn't notice at the time.
 
One of the things that we tried for my husband when he began having trouble taking pills was to put them in some applesauce or yogurt. He had difficulty swallowing thin liquids so it was very difficult swallowing pills. When it became impossible for him to swallow liquids, we had to have a peg tube put in his stomach. He used to tell some of our fosterchildren that he had a bigger piercing than any of them--or their girlfriends.
 
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