Everything Fell Apart Again:My Experience

[ChaoticGlow42]

I felt pretty good about everything for about 2.5-3 weeks. The hoarseness let up, the strange mouth symptoms let up, along with jaw jerking and those internal tremors. Everything seems to have fallen apart again. I started up tremoring again...I did note that the tremors came with my period. My tongue is twiching..big twitches. I've had that vibrating weird feeling on my tongue again. I am definitely still hoarse.. My eyes get watery too. Everything is still much worse when I lie down and try to sleep...I almost dread going to bed. It's not like I sleep well and everything just hits me when I lie down.I thought I had turned a big corner but the fears are still creeping in. I have been at this mouth/jaw/tongue/hoarse stuff for almost 4 months. I've had body twitching, jerking and pain since November. I can't say I am any worse...do you think by 4 months, I would be seeing significant changes if this was something bad....most worried about the bulbar stuff (and my left ankle locking up on me too). I've been seen by a neuro and an ENT. I could use to hear from this board again. Thanks...Jess

 

[Krackersones]

I've been with this for over ten months and many of my symptoms are the same as yours including the tongue twitching (still every day but only a couple times a day), internal tremors (these are definitely there some days and not others but never away for long), hoarseness (but I teach so I'm talking loudly all day and had this periodically before I ever started twitching), and of course the hot spots and random twitching everywhere.I'm comforted by the fact that our symptoms are not unique on this board and everyone is fine. The overwhelming odds are we have something going on that no one wants to study because it is just annoying and scaring but not that big a deal when compared with other more tragic diseases they haven't cured yet.I'm trying to cope by using my symptoms as an excuse to pamper myself. I'm going to a spa I joined starting this weekend. Cutting down on stress is my goal.Krackersones

 

[Thegoddessina]

The fact that your symptoms are off again and on again should reassure you that these feelings or symptoms are benign.Remember that the majority of people who suffer from what you think you have are complaining about not being able to swallow or speak. Hoarseness is not the same as not being able to form words. I don't understand the correlation with watery eyes and I guess I really don't want to know.What helped me with the jerking was doing my physical therapy exercises while watching a funny movie like "When Harry met Sally". I was able to honestly tell my therapist yes I did my exercises and I got my mind off the symptoms while watching a funny movie. Maybe a little exercise before bed will help let off some of the anxiety your body is holding.I also noticed that my symptoms were worse when I was stressing about personal things. Is there something in your life that might have triggered the symptoms again? Know that you are not alone. You are not alone in this.