New to the forum

[foxa]

My name is Alan, I am 39 years old, and am in the process of being potentially diagnosed with ALS. I am seeing a neurologist tomorrow and have an EMG scheduled for a week monday. My symptoms are that my speach gets very gummy, while stress builds in my throat and jaw, I have lost use of the muscles in the back of my neck(can't lift my head from the pillow), I have tweeky forearms and biceps, to a lesser degree I occasionaly experience cramps throughout my body. I have not had any problems with my arms and legs as far loss of strenght is concerned.

If any of you could comment I am a bit starved for information.

Thanks,

Alan

 

[pudge44]

Hi Alan I am praying for you and wish you all the best with your appointments, come back and let us know how you are & what is happening (((((((( big hugs))))))))))))))) Kim.

 

[foxa]

That bad eh?

 

[BarryG]

Please define "gummy speech"

 

[abbas child]

Barry knows the speech stuff well, Alan.

 

[pudge44]

Barry is da bomb !

 

[foxa]

By gummy I mean it feels awkward to speak as though my mouth is becoming lazy on its own. When I wake in the morning I can feel the gummy feeling but it doesn't really kick in until I have been speaking for a while. This feeling is accompanied by a feeling of tightening in my throat and jaws. Any advice would be appreciated.

Thanks,

Alan

 

[pudge44]

Alan why I am praying for you is I know what it is like to have something going on but do not have the answers, I hope it is not ALS and is something else, if it is ALS you will get a lot of support here, my husband has bulbar als and I could not get by without the support.

His did start with his speech ( he can no longer speak a full sentence now ) barely audible, you need to focus on getting all tests done and hopefully it is something very fixable ((hugs))

 

[foxa]

Barry

Would love to hear back from you when you get a minute.

Cheers,

a
Alan

 

[foxa]

I am not religious but thank you for your prayers.

All the best,

Alan

 

[abbas child]

Alan, you see in scrolling down, Barry's name? If you click on it, you can go to his profile page and leave a specific message there for him--and in the upper right corner of every page is your own name. Underneath it, it probably says, "private messages". If you ever see a number, click on it to see messages left on your own page.
Best to you.

 

[BarryG]

Alan, I don't really know about gummy speech but I can tell you that bulbar onset ALS almost always starts with slurred speech as if you'd had too many wobbly pops. Usually this slurring is first noticed by others, I hope that your doctors can figure out whats happening with you and that you get good news.

 

[foxa]

Barry

Thanks for the input. No one has really mentioned anything to me about my speach, its all been through my self assesment. Here's hoping that this whole episode has just been one big life affirming and changing experience that will not result in me being ill. The mental gymnastics one goes through are pretty wild.

Will let you know how it goes.

Alan

 

[michael0314]

Foxa, Your the only one who understands your symptoms. I described my voice problems in the beginning as having to push more air or push harder to make the sounds. I noticed the problems months before anyone else did or said they noticed. The first slurring was likened to being outside and too long and having a numb face from cold. Now for the big news Everyone's onset is a little diffrent. Speed of affliction and symptoms can vary wildly. My only advice is wait till you have the tests run and find out results. Now for my 2 cents As ugly as ALS is there are alot of positives that can be counted if your diagnosis is positive. I hope your not in our club except as a spectator but if you need us we are here.

 

[foxa]

had my meeting with the Doctors today and was also able to have an EMG done as well. Both Dr's agreed that they thought the probability of ALS is low based on their examinatation and EMG. I still need to have an MRI of my brain and spine just to be sure but things are looking up. Must be in shock or something because I feel pretty flat. Just wanted to thank those of you that got back to me and wish you the best of luck. This has truly been a life changing experence that I and my wife will never forget. For those of you in the Toronto area I will see you on June 4th for the walk to end ALS, my team is called ``Daft Monkey`s`.

Alan