Vast symptoms... worried about Bulbar onset.

[MissyK]

I sent a message to the chief on neurology at the U of U explaining my new symptoms and told him that I had a hard time sleeping last night as my left leg ached so badly I could hardly sleep. It felt like the worst growing pains or like someone had a tourniquet wrapped around it. I also told him that I'm having a lot of pain in my mouth... under my tongue in the area of my submandibular salivary glands. I'm not sure if this is Glossopharyngeal Neuralgia related since its on both sides and not just my left, or if it's sore muscles. He messaged back and said he'd like to see me again. What a relief!! Maybe there is hope for an answer locally afterall.
Do people with ALS complain about muscle pain? I'm in a lot of pain... arches of feet, hands, left leg, and under my tongue right now.

As always, I thank you for your support. I will let you know when he plans to see me again.

Thanks,
Missy

 

[MissyK]

Are my posts showing up?

 

[Atsugi]

Yes, they are. East Coast members are in bed, now.

 

[Atsugi]

OK, Missy. I just went through your posts and also the replies. What people are trying to tell you is that you don't have any reason to fear ALS. Even your doctor said that. I'll answer your question about pain.

Pain is not an indication of new onset ALS. There would be no reason for it to occur. In ALS, pain occurs after a leg or arm has been paralyzed, flaccid and non-moving for awhile, because the joints get stiff from not moving. Also, swelling occurs in the legs when a person with ALS has been sitting for days or weeks.

ALS is a brain disease where a specific set of nerves in the brain are destroyed. These nerves are the ones that send the "contract" signal to your muscles. When ALS destroys a nerve, then that nerve cannot send the "contract" signal to its muscle, so that muscle doesn't move. If you are still walk, talking, and brushing your teeth, you're muscle are working.

You have no reason to think about ALS.