Hey man I saw you are having swallowing issues as well. For me it's with liquid. Like water feels as if some, not all of it goes up behind my nose. It's not like it drips out but just sits there. Then it feels like it stays there and bothers me.
Something treatable would be so good mate, those letters ALS/MND I hope we never have to hear them, also! I know we aren’t allowed to give out our deatails, but I’m very easy to find on FB with my unique spelling so feel free to find me! For a little more privacy
I've been reading your conversations with Arran and I'm sorry about what you guys are going through. It really sucks. I have started to experience symptoms and I sadly believe it's MND for me. I get the twitches in my tongue as well. Do you guys twitch in the tongue? Arran please answer if you read this too.
I guess i can post on here, been reading your comments and convos. Would like to join in on this journey with all of you, im 21 M. Started twitching bodywide 6 months ago, clean clinicals but no emgs yet. My neuro (NP) is a clown and basically said i could have als without doing any actual tests so i stopped going to her. I dont seem to hve any atrophy or weakness but who knows at this point.
Hope you are well. Been trying to stay off the site...keep the BP down . I’ve seen on posts that people have traded email without it getting deleted. I tried to send u mine and apparently it did. I had the same with thyroid nodules and it turned out to be nothing. I understand about wanting answers
Hi Fasciculation1, it sounds like we're both in the Bay Area. I have not been to Stanford but have been to UCSF and a bunch of neuros at Kaiser. Have you tried Trazodone for sleep, supposedly neuroprotective....well, in mice, at least. :-/
I’ve been reading your story, and I’m in a very similar position to you, although you have managed to explain yourself much better than me! I’d be very interested in hearing from you as I’m sure you know how isolating this situation make us feel! The doctors think we are mad and family and friends try to understand it but really have no concept of the severity of it all