2 1/2 Years of Twitching: A Journey

Highlights Only
Y

ytewestGo99

Well-known member
I haven't posted here for a while which in and of itself is a victory for me. But whenever I get one of those hot-spots, I remember my friends on the BFS board. :p Ladies and gentlepeoples, I have been twitching for 2 1/2 years now. It was an emotional roller coaster at first and sometimes it still is but not so much was when it first started.I went through the whole doubt phase, didn't believe my doctors, stressed over every single twitch, got depressed, on and on.I google'd every symptom under the sun and started to diagnose myself (bad mistake). But finally, after time passed, I had to accept a few things.* I don't have ALS* My doctors are smarter than me* I can't control every detail of my life and health* I wasted a bunch of time worrying for nothing.And I had the whole gambit pf problems. I have, at some point, twitched in EVERY muscle in my body. I have had hot-spots that lasted for weeks on end. I was convinced something was wrong, they wouldn't go away ... but they did ... eventually ... and cropped up in other places. :rolleyes: 2 1/2 years later I'm still alive and well and you will be too. Trust the senior members on this forum when they tell you to stop worrying. They (we) have been down that road already and we just want to save you the same unnecessary grief. Although experience is the greatest teacher and some of us will just have to learn the hard way that we are all right (I chose that route and now I look back and laugh at myself, but also I was blessed to have gone through it and learned how to shape my reactions to future events, whether they are ALS fears or something else)This is a great place to get al of the fear and anxiety off of your chest and to get some encouragement from others. This forum was a God send for me. But don't hesitate to take the next step. Move forward, keep the faith, live life.God bless,Troy-----Hi old-timers, long time no talk. Hope you all are well and happy.I'm still working at Microsoft and enjoying life. Riding the train to work every day and having great devotional time in the mornings. Life is good :)
 
Thanks for the words of encouragment, ytewestGo99!We have two things in common. We both work at Microsoft and we both twitch. Maybe we can blame it on the job. As everyone knows, Microsoft is a competitive environment and the cause of a lot of stress. However, its the most fun I've ever had working.See you around the watercooler!~db
 
Hey Troy,Great to hear from you brother! Great post. Good to hear you are still on top of this. Keep it up. Thanks again for all your help.I agree with you 100%. I spent 2 months bedridden over this stuff in the beginning and became very freaked out. I took some pictures of myself then that looked horrible! I truely looked like I was dying. Nothing but hollow face and skin and bones. My wise wife thru them away instantly.2 years later I am still fighting but TONS better because of The Lord and this forum!God bless youDD
 
Thanks Troy - I am sitting here, after a year of a few months of twitching, and was doing great for about two to three months. It is nice to read your post and know that you are fine after two years. I just now have to convince myself that I am okay, after two neurologists telling me I am fine - I just don't feel that way in the past couple of weeks. My twitching seems to be isolated to one leg and arm (left) - which is freaking me out a little and not going away, whereas most of my twitching and weakness has gone away - this is not!My question is how to deal with the mental aspect of this - what helped you?Thanks Karin
 
Karin,My initial twitching was all over--very random. During a lot of relapses, or when the twitching was starting to lessen from the 1st I'd have a lot of "hotspots" or just isolated twitching in one area. This time it's been my left shoulderblade shoulder and left back area, (since November of last year). My left eye as well and my left index finger has a tremor. Also have had other twitches and weird feelings, sleep starts, etc. this time, but a lot of the twitching is isolated to the upper left area. Time before (a couple of years ago) it was my left leg that was a real hotspot. This relapse is starting to get better; the twitches aren't always just "random" with me but they eventually always go away and I'm still functioning at 100%. Best Wishes, Denise
 
I'd read through "BFS In A Nutshell" and I'd read the accounts of other twitchers. I'd take an honest look at my twitching, add that to what the doctors had already told me, and I would have no choice but to believe that I, like the rest of us, only fit into the category of BFS.I have had twitching that has been on the left side of my body for a majority of the time. I have a hotspot that won't go away right now on my left hand/thumb. Some of my hotspots las for WEEKS ... ARGH ... It scared me (even 2 1/2 years later) but with time comes experience and you can say, "hey I've already been down this road" and dismiss the irrational thinking.At some point, I would even sit down with my EMG reports and read them over and over. Now all of this helped me because I wanted proof and assurance. I wanted a 100% guarantee (translated as a lack of faith). And so having that physical proof helped me out of the pit. But having some faith will keep you from going back into the pit (Faith in God, your doctors, whatever faith you can cling to right now).If you've been twitching for as long as you say you have and your doctors have already told you that you do not have ALS or MS or something similar, then I would re-read "BFS In A Nutshell" and journal about all of the information.If facts help you overcome fear (as they did for me) then you can look at the facts ...Muscle twitching without profound debilitatiing weakness and EMG changes and muscle wasting and a failed neuro exam ... are not a sign of ALS. You see, just weaknes and twitching are not enough to make a diagnosis of ALS because you can have muscle weakness and twitching for a variety of reasons and one of the major reasons being BFS. That is why you go to a neurologist and get a physical exam and if necessary, an EMG. But quite frankly, the physical exam is worth about 90% of the diagnosis. You don't even need an EMG if you pass the physical exam and most neuros would only perform an EMG to make the patient fell comfortable or reassured.So for you it sounds as if the diagnosis has already been made, your doctors said you are clear and so what's left is, practicing your wellness. Reassure yourself every day if you must, read your EMG report if you had one done or just journal the words that your doctor said to you when you were in his office and he said "everything is fine" and re-read it whenever you have a doubt. I used to carry me EMG reports around in a binder with all of my journaling as well as a copy of BFS In A Nutshell and I'd read, highlight, etc. and prove to myself that I was being irrational in my fears. I called it my Victory Binder because ALS was not my illness it was Obsessive Compulsive thinking that was the real illness for myself and many on this forum and that's where I needed to gain a Victory in my life.If you want to message me, that's fine. But you must come to the point where you don't get emotionally drained when you have these twitches and bouts of muscle weakness. It's all part of the BFS diagnosis and your doctors evidently agree :)God bless,Troy
 
Hey troy, thanks for your posts! I am an 8 month twitcher and your words make sense. I believe this is a disease that is perpetuated by health anxiety or OCD. It isn't caused by that, but it is fed by it. Once we address those issues, we can concentrate, as you said, on our own "wellness".Thanks for writing on the forum :)Linda
 
Hey Troy, nice to see you here and glad things are going well for you. I'm still twitching as usual. I have had some heart problems and got a pace maker in December. At 37, this is alot on my plate. I actually had an appointment with my neurologist today and he said I am doing great. My exam was perfect. So, I am almost 4 years into this and things are still the same. I think BFS is here to stay!Take care,Amy
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top