u/Decent_Mongoose_4520

Is this a true statement and does anyone else have these issues and found any solutions….that aren’t diagnosed with anything at this time. Ive had burning tongue and gums for long time 2 years and the cracked tongue and fissured. The pain has been happening for awhile but now much worse. They checked vitamin and hormone levels and they are good. 😏

Pain and burning when talking are common in advanced Bulbar due to the extreme effort required to move weakened muscles and the potential for secondary nerve irritation. An atrophied tongue can develop a "cracked" or fissured appearance, and this physical change often leads to intense sensitivity to spicy, acidic, or salty.

This is so crazy that every neuromuscular doctor Ive been in front of says nope not a symptom of ALS. Really these doctors are really off target on this! Lol every symptom I have they say the very same thing about. I keep it together 99% of the time but this one got me.

https://www.facebook.com/share/1HrdagVuy5/?mibextid=wwXIfr

Does anyone have the symptoms of the muscle weakness/atrophy in front and back neck, head, scalp, temples, eye area also like eyes are sunk-in, in addition to their tongue and swallowing. Or even the nostrils. The pull of the weight of body just wanting to fall forward when leaning over or sitting due to what seems to be the weakness.

Not sure how many know of Deanna or how many would say she isn’t a real patient some on her claim you can’t believe people on FB. She is answering any questions you might have If she can get to them. For me I asked so for those that have claimed I might be a troll or my story isn’t real well you might see I am a real person!
Seems as if my neuromuscular team isn’t off the mark with 3-5 years as it seems in her story symptoms for up to 3 years prior.
The research people are showing on here doesn‘t have all the facts all the time. Be nice to one another and stop bullying because you think you have all the answers due to research articles. No one’s story is the same and absolutely some people are way more in sync with their physical health than others. So don’t shame the ones who recognize their symptom! Neuromuscular doctors absolutely need to listen to other doctors! Or stop wasting your time with Neuromuscular doctors and find other good specialists that will help find out answers and not wait for the emg to show it! Sorry that’s laziness at the expense of the patients. I’m sure someone will find some loop holes in her story but it reads to me that symptoms can absolutely be present for years before it becomes evident in any test. EMG, NFL etc….which is what the other article reads about the NFL protein that some gas lighted me about on here. The suggestion MND could be active for years….sorry but this to me shows don’t be a know it all it’s one thing to give opinions but a entire other thing to make fun of someone or others people stories and then chalk it up as you are the 1 in a million and make fun! Be nice just be nice!