Jupiteryblazeyangler
Member
Hi everyone,
I am new to this board. I wish I had known about it about four years ago when I first started having twitching, cramping, and essential tremor.
To sum it up right now, right now I'm a mess.
But first a little background. Four years ago I made the mistake of clicking on a link in an interview article with Christopher Reeve, where he talked about how he hoped his interest in helping people with paralysis might lead to a cure for ***, a disease I had not known much about. That led me to a nice introduction to this illness in a way that only the internet can provide.
Well, let's just say that my wife and I were supposed to be going on a camping trip that weekend, and not only did we not camp, but we came back a day early because all I could do was worry about having ***. And of course that night for the first time I noticed how many body twitches I had. It was a long night. And until I decided to go get a doctor's appointment, I would just sit and waste entire days doing nothing, just counting twitches and feeling like I couldn't breathe.
Now I've been a constant worrier about such things my whole life, starting young with cancer, then I worried about having HIV, then when Michael J. Fox came down with Parkinson's I thought I had that. But *** terrified me like no other disease and I honestly wished I had never heard of it.
I made an appointment with my GP, who assured me that he could observe the twitches, but that I was not weak, though something was lost in translation and he said, "not yet." Now I don't know about you guys, but I will twist things my doctors say around and around in my mind. I asked for a neurology appointment, and got one, but not for two months or so. I felt a little better, but still was uncertain.
The neurologist did the usual tests and found nothing wrong, but being a good sort he sent me for an EMG in several weeks, which came out clean. "Don't worry, you've probably just got BFS, and it doesn't turn into anything else." During the followup the neuro reiterated this and said the fasiculations were completely harmless. "The EMG is a snapshot of you now. I can say with complete confidence you don't have ***. However, that is not to say you won't get it in 10 years, just that you don't have it now."
I followed up this visit with about a year of psychotherapy appts., during which I was on zoloft, which helped a lot, and I made a lot of progress in thinking about *** and even if I did have it, how it didn't necessarily mean the end of all things...we also looked at why I was so scared of this disease in particular. I was most grateful to have found in my own occasional info gathering that even if you have ***, you can still get artificial ventilation which means you don't have to suffocate, which is what scared me most.
Anyway, fast forward four years. I am currently undergoing more stress than ever before, and my dreaded disease related panic attacks have started to return. I am trying to finish my doctoral thesis, obtain my flight instructor rating from the FAA, am teaching at a local university, and am starting a new office manager job (temporary). My marriage of five years appears to be drawing to a close, probably worst of all.
Now lately I have noticed the twitches picking up again, along with some of the deep cramps I've felt before. I also get panic attacks and everything gets twisted around to be about *** in my brain. Darned if I didn't almost faint when I saw a big sign at my airport pointing out various airport lighting systems (ALS). And sometimes I feel a "twitch", put my hand on it, and find it was only my pulse. I'm also itching a lot.
Most worrisome, at times I also feel like my left foot is dropping, so I do endless tests on it like the neurologist did and find it still appears strong, but sometimes it "feels" clumsy. And all the while I keep hearing the neuro saying, "it doesn't mean you won't get it 10 years from now."
Over Christmas with my folks (without my wife
) that's practically all I did, worry about my foot.
Can someone please help? *** is the most terrifying thing in the world to me, moreso because in a time when my life feels like it is getting out of control, it represents I think the possibility of my whole body getting out of control. Unfortunately alcoholism runs in my family, and I find I've been taking up smoking (a habit I'd almost kicked) and drinking much more than usual. I'm also gritting my teeth a lot unconsciously.
Thank you for reading this, it is good to know that there are other people out there who have experienced similar things.
I am new to this board. I wish I had known about it about four years ago when I first started having twitching, cramping, and essential tremor.
To sum it up right now, right now I'm a mess.
But first a little background. Four years ago I made the mistake of clicking on a link in an interview article with Christopher Reeve, where he talked about how he hoped his interest in helping people with paralysis might lead to a cure for ***, a disease I had not known much about. That led me to a nice introduction to this illness in a way that only the internet can provide.
Well, let's just say that my wife and I were supposed to be going on a camping trip that weekend, and not only did we not camp, but we came back a day early because all I could do was worry about having ***. And of course that night for the first time I noticed how many body twitches I had. It was a long night. And until I decided to go get a doctor's appointment, I would just sit and waste entire days doing nothing, just counting twitches and feeling like I couldn't breathe.
Now I've been a constant worrier about such things my whole life, starting young with cancer, then I worried about having HIV, then when Michael J. Fox came down with Parkinson's I thought I had that. But *** terrified me like no other disease and I honestly wished I had never heard of it.
I made an appointment with my GP, who assured me that he could observe the twitches, but that I was not weak, though something was lost in translation and he said, "not yet." Now I don't know about you guys, but I will twist things my doctors say around and around in my mind. I asked for a neurology appointment, and got one, but not for two months or so. I felt a little better, but still was uncertain.
The neurologist did the usual tests and found nothing wrong, but being a good sort he sent me for an EMG in several weeks, which came out clean. "Don't worry, you've probably just got BFS, and it doesn't turn into anything else." During the followup the neuro reiterated this and said the fasiculations were completely harmless. "The EMG is a snapshot of you now. I can say with complete confidence you don't have ***. However, that is not to say you won't get it in 10 years, just that you don't have it now."
I followed up this visit with about a year of psychotherapy appts., during which I was on zoloft, which helped a lot, and I made a lot of progress in thinking about *** and even if I did have it, how it didn't necessarily mean the end of all things...we also looked at why I was so scared of this disease in particular. I was most grateful to have found in my own occasional info gathering that even if you have ***, you can still get artificial ventilation which means you don't have to suffocate, which is what scared me most.
Anyway, fast forward four years. I am currently undergoing more stress than ever before, and my dreaded disease related panic attacks have started to return. I am trying to finish my doctoral thesis, obtain my flight instructor rating from the FAA, am teaching at a local university, and am starting a new office manager job (temporary). My marriage of five years appears to be drawing to a close, probably worst of all.
Now lately I have noticed the twitches picking up again, along with some of the deep cramps I've felt before. I also get panic attacks and everything gets twisted around to be about *** in my brain. Darned if I didn't almost faint when I saw a big sign at my airport pointing out various airport lighting systems (ALS). And sometimes I feel a "twitch", put my hand on it, and find it was only my pulse. I'm also itching a lot.
Most worrisome, at times I also feel like my left foot is dropping, so I do endless tests on it like the neurologist did and find it still appears strong, but sometimes it "feels" clumsy. And all the while I keep hearing the neuro saying, "it doesn't mean you won't get it 10 years from now."
Over Christmas with my folks (without my wife
) that's practically all I did, worry about my foot.Can someone please help? *** is the most terrifying thing in the world to me, moreso because in a time when my life feels like it is getting out of control, it represents I think the possibility of my whole body getting out of control. Unfortunately alcoholism runs in my family, and I find I've been taking up smoking (a habit I'd almost kicked) and drinking much more than usual. I'm also gritting my teeth a lot unconsciously.
Thank you for reading this, it is good to know that there are other people out there who have experienced similar things.