Recent content by Sunvista

Not on BiPAP.

I have been diagnosed with bulbar onset ALS. Lately I have been experiencing numbness in my upper two front teeth. My dentist did one of those panoramic x-rays and couldn't find anything wrong. Could this be at all related to ALS? While on the subject of ALS symptoms, lately I've been...

I was diagnosed with bulbar ALS over a year ago. My voice has gone soft and monotonous and I really have to struggle to speak certain phrases or combinations of words or letters such as "st". People around me tell me they can understand what I'm saying yet they constantly ask me to repeat...

How do PALS feel about Ketone supplements? Not as a cure obviously but just about feeling better in any capacity. I get a lot of "recommendations" from friends. It's an internet thing. :)

A family member sent me a TED talks video by an Harvard PHD named Paul Allen Cox. He promotes the use of a nutritional supplement called L-Serine for motor neuron disease. Anyone have an opinion on this product? Its pretty cheap so I ordered some.

Polar fleece is very light and warm. Make sure you get the real thing though by Polartec. "Polar fleece" has become a generic name for any cheap synthetic fleece.

Existing symptoms staying about the same. No muscle fascillations and no new symptoms except one. Before getting out of bed in the morning I stretch on my back. My whole body trembles or vibrates. Strange sensation.

The VA neurologist ordered an ENT exam which has not yet been scheduled. The VA speech pathologist ordered a swallowing study. What is parotid disease? I wouldn't say the VA neurologist was in the least flummoxed. He was skeptical of the first EMG and almost totally convinced of his own...

After experiencing slurred speech, excess saliva, jaw tension and swallowing problems for several months I went to a neurologist who prescribed Mestinon for Myasthenias Gravas. It didn't work so she ordered blood work, did a rudimentary EMG, ruled it bulbar onset ALS and referred me to Johns...

My VA doctor wants me to try Atropine eye drops to control my saliva. Swallowing eye drops seems a little odd. Anyone here using this method for saliva control?

Still here but this brings up a good point. How do we establish any "corporate memory" when all of the experts (PALS) inevitably go away.

I guess this is a good thing except insurance won't pay Virginia becomes the 11th state with right to try laws ( link removed contains ads)

What is amitriptyline? Is it by prescription?

What do you other PALS take for excess saliva? My neurologist prescribed me a transdermal Scopolamine patch for its side effect of drying up saliva glands. It seems to work okay but the co-pay is a little pricey and I've started getting nose bleeds. Not sure that is related but certainly an...

When you began losing your speech what alternatives did the VA offer if any? My VA center here seem totally ignorant about ALS. Or I haven't gotten to the right person yet. They were recently rated worst in the country for appointment lead times. I still don't have a PCP (since November) so...