Walking Circles 53 Posted April 7, 2017 Well the good news is that I've made a lot of progress on my fear of dementia. Bad news is that my ALS fear is back in full swing. I started that particular fear five years ago. Body wide twitching, felt like the inside of my chest vibrated, muscles fatigued easily, etc. Since then I have gone through ups and downs with that particular fear. Last major flare up was a year ago. I started taking Lexapro for my anxiety and slowly things got better. A few days ago I noticed a small red splotch on my tongue, in that area it looked like the little hair like fibers on the tongue had gotten smaller. I convinced myself it was atrophy and away we went. Now for at least two years now I have had some issues with my throat. Basically anytime I drink I get air with it and burp afterwards. I can feel solid foods go down when I swallow etc. Now I do have horrible sinus troubles with lots of drainage and at least a decade worth of untreated acid reflux. Doesn't matter cause in my head I attribute it to more worrisome causes. I also notice that my tongue twitches at rest in my mouth, it has done so for at least a year now. I also have deep teeth indention on the sides of my tongue, but I do grit my teeth a lot and sort of press my tongue into them. Well tonight I've been in a full blown panic. I have been self testing my reflexes. I'm worried because when I test for a Hoffman sign sometimes I get some movement on the left hand, and very rarely on the right in fact sometimes the left thumb will begin twitching up and down! Tonight I discovered a reflex called the Jaw Jerk. Needless to say I began testing for that one too. It seems to me like I do have a Jaw Jerk reflex, but to be honest I don't have any training so who knows if I'm doing it right. I never know how hard to hit with reflex testing. I'm rambling, but needless to say I'm in a full blown panic worrying about this. I'm upset because I thought I was over this but it's all come back. Quote Share this post Link to post Share on other sites
utrocket09 115 Posted April 7, 2017 If you read others comments here about ALS twitching was not of the early symptoms. so, if you are not a Dr. I would say stop testing yourself, you don't know what you are looking for. Quote Share this post Link to post Share on other sites
Ihadcancer 321 Posted April 7, 2017 YUP! I actually read that just as you cannot tickle yourself, you cannot properly test your own reflexes. It's a mind over matter type thing. I smashed and threw out all my magnifying mirrors. Oh the things we do to ourselves! Quote Share this post Link to post Share on other sites
Holls 1505 Posted April 7, 2017 I really hate to hear anyone else doing this.. I've been having Als fears since January, it's horrible. There is an ALS forum that I suggest you not go to lol. It it has a sticky posts before you even enter and it explains Als so we'll. They even address the tongue twitches. Everyones tongue twitches when you stick it out.. stop doing that. A doc is the only one that can judge tongue twitches. I had a nuero appt this week he observed my tongue for a long time. I had no idea what he was doing the I asked.. They also say twitches are not a first symptom. They say Als is about failing not feeling. It's hard, but if you start to rationalize your fears to facts, you will start to feel better. Quote Share this post Link to post Share on other sites
Walking Circles 53 Posted April 7, 2017 3 hours ago, Holls said: I really hate to hear anyone else doing this.. I've been having Als fears since January, it's horrible. There is an ALS forum that I suggest you not go to lol. It it has a sticky posts before you even enter and it explains Als so we'll. They even address the tongue twitches. Everyones tongue twitches when you stick it out.. stop doing that. A doc is the only one that can judge tongue twitches. I had a nuero appt this week he observed my tongue for a long time. I had no idea what he was doing the I asked.. They also say twitches are not a first symptom. They say Als is about failing not feeling. It's hard, but if you start to rationalize your fears to facts, you will start to feel better. I know exactly the ALS forum you are talking about! I created an account there roughly five years ago when all this started. On the tongue twitches mine does it even at rest when not extended, but I have seen several people over the years that have had neuro's confirm tongue twitches but weren't concerned about them. Quote Share this post Link to post Share on other sites
Holls 1505 Posted April 7, 2017 Did they think you had Als? If they weren't worried I wouldn't be.. I've read the advice they give people and they really want to help and know what they are talking about. If they tell you know you just breath a deep sigh of relief and try really hard to stop worrying.. the more I worry the more twitching I have.. when I calm.down they stop. My nuero doc told me yesterday that if your twitches stop and aren't constant that alone is a good sign. Again, I hate you are in this spiral but you can pull yourself out if it. I keep relapsing back in it but it's better than staying there lol..One day soon I hope I will be fully out and you too. Quote Share this post Link to post Share on other sites
Trainwreck 17 Posted April 8, 2017 Walking, "Now for at least two years now I have had some issues with my throat. Basically anytime I drink I get air with it and burp afterwards. I can feel solid foods go down when I swallow etc." Problems with tongue and throat would suggest bulbar onset. In that case, after two years you would either be dead or in a wheelchair on a ventilator. Again, as I have said before, this is not a subtle disease. When they symptoms start, you don't think "Is this all in my head?" It attacks your body and destroys your body, quickly. Quote Share this post Link to post Share on other sites
Jae 211 Posted April 9, 2017 My neighbor was diagnosed June 2016 with bulbar ALS, he died September 2016. 1 Quote Share this post Link to post Share on other sites
