Twitches Spread: 2004 Onward

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affectikon

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It originally started in 2004. I noticed twitches in my calves. Of course I googled and panicked. Then, the twitches spread to the rest of my body. I was focused on my tongue and throat and didn't think I could swallow or talk without slurring words. I went to the dr. and they gave me anti-depression and anti-anxiety medicine. Then I scheduled my first meeting with a Neurologist. He wasn't real friendly about the whole thing but said I was fine. I convinced him I needed an EMG. He performed one and it was clean. I was still nervous so I went to an ear, throat and nose doctor. He said everything looked fine. I was still concerned so I went to an ALS /MS clinic in early 2005. The Neurologist did a very thorough exam that was normal. He knew I was concerned so he did an EMG and it was clean. That finally did the trick and I gradually had my twitching decrease over the next couple years to just my calves. I weaned myself off the Alprazolam and Paroxetine that my general doctor had me on in about 2007. Ok, fast forward to fall 2010. I was lifting weights and had pain in my right arm. Also, during 2010 I had a few times where all of a sudden I had severe pain in my funny bone even though I didn't hit anything. My pain in my right arm gradually was getting better when I noticed I was having more difficult typing and I had wrist pain (more on my right side). I make an appointment with a "wrist" dr. but then I notice my two small toes on my right foot is giving me problems. They always feel like they are "out of place" and I have to push them down with my hands or my other foot. Then, I notice that when I turn keys, open doors, jars, etc. my wrist hurt. I then notice that my left foot gives out a little once in awhile and is sore on the top of my foot. Then, it all happens, I start to get twitches all over. I cancel my appointment with my "wrist" dr. and go to my general doctor. I ask to be put on the Alprazolam and Paroxetine. That at least helps me sleep at night which I wasn't. I make an appointment with Neurologist but it is not for 3 weeks (now February 8th). Because I hadn't been there for so long they have to schedule me as a new patient. Now, of course, I believe I have ALS because this time I have more muscle cramping and maybe muscle weakness. Additionally, if I clench my wrist I have indentations in my wrists. However, you don't see them if they are not clenched. Additionally, if I lift my left toe I have an indentation on the top of my foot. I don't have that on the other side when I do the same thing. One thing I notice is when I take a nap and wake up I can tell my tongue, hands and feet have been going crazy. I feel better after I have been up for a while. I have also woke up in the middle of the night and my right hand was asleep and numb.Sorry for the ramblings. Has anyone had these experiences. I seem to put my life on hold as I wait for these appointments.
 
After reading your story I will say this....nothing in your description of 2010 (or previous for that matter) leads me to believe ALS should even be remotely considered. Nothing. Nothing. Nothing.I suggest getting your wrist checked out in case you injured it somehow. I also have pain in my left wrist when I do certain things which might be from me lifting weights. The rest sounds like anxiety and BFS and anxiety stuff, which I have definitely experienced much of what you described.
 
Thanks for the comments. The only concern about my wrists are that both the left and right have some pain. I am hoping it is just some form of carpal tunnel. It seemed to show up all of a sudden.
 
Sorry that you are having a relapse. I have had this crap for one year and was hoping it would go away yesterday . . . As far as most of your symptoms, I could have written your post. My forearm has been on fire all day. If I focus on my hands I can find indentations when I close them and my upper arms twitch too much for me.I find your post reassuring in that you had more EMGS than I (had one) and no one, inc. the ALS specialist found anything for you. I agree with Johnny-The-Jet, you are fine (regarding ALS) Cancel the appointment with your neuro. Be happy about your pain in the sense that - it is NOT weakness.
 
I know I shouldn't be this concerned but the only way I can get any comfort is to go back to the Neuro and hopefully get good news again. Since it was 6 years ago since my last EMG, I can't convince myself I am ok now. Thanks for writing. Hopefully I can get good news and then eventually get it calmed down like last time.By the way, I didn't put in my original post but I am a 45 year old male, married, with 4 kids ranging from 6 to 22.
 
Thanks for the detailed response. One thing that gives me some comfort is that alot of people seem to have the same symptoms. I just didn't have the pain and cramping the first time around so that is what got me worked up. I will still be nervous until I get through my appointment with my Neuro. It is always hard to wait because the mind keeps thinking.
 
I have GERD too so that probably made my tongue and throat anxiety worse the first time around. My BFS seemed to start to get better at about one year. Hopefully you will see some improvement soon.
 
I didn't have the cramping part either in the first few months, but now I do and my neuro has no concerns that it is anything to worry about. Cramping is very normal for many bfs'ers and in fact puts you into a slightly different diagnosis category: cramp fasciculation syndrome, which is what I have been dx'd with (22 months now, including a very recent follow up EMG/NCT to confirm). So, welcome to the new club! You indicate that your neuro appointment is Feb 8 - tomorrow, so let us know how it goes. Good luck! (Oh, I also have carpal tunnel in both of my wrists....)
 
I am back from the Neuro. He did all the strength tests, etc. and things were similar to last time (6 years ago). He did ask to perform an EMG and wanted to run some blood tests. He didn't tell me which ones but when I went to get my blood drawn the nurse was amazed by the amount of tests. I asked her if they were all vitamin related and she said several were but there were ones for Lyme and lactic? acids. I will get the results from these when I have my EMG on February 21st. He did prescribe me Neurontin. I am pleased with the results and of course anxiously awaiting my February 21st appointment.
 
I have been fasciculating (all over) and cramping for almost 10 months now. My left foot really has a tendency to cramp. My 2 smallest toes on that foot are like yours...they don't seem to flex normally and feel as if they are dystonic (out of place)! So we have that in common. My neuro (ALS specialist) had no specific remark on my toes....I think I stumped him!! Any updates?mjb7002
 
When I mentioned it to my Neuro he didn't seem too concerned (about my 2 small toes). It still bothers me. I changed shoes I was wearing in hopes it would get better but it hasn't improved much if any. I can still bend my toes fine. I get an EMG tomorrow so hopefully I get news that it is all benign. I have only had the cramping all over for about 2 months. Prior to that I had the random twitching for 6 years.
 
I had my Neuro appt today. Good news. Everything was normal on my nerve study and EMG. He tested nerves on right leg and right hand and did EMG on right leg and back. He said no ALS so stop worrying. Everything was ok in the blood work except I am very low in Vitamin D. He asked that I take 1000iu in morning and at night. I am supposed to go back in June or July to make sure my D is back to where it should be. Thanks for everyones support.
 
Congrats Cyclonesfan, and thank you for posting and sharing your good news. What is your Vitamin D level? Mine is quite low and so many of your symptoms sound just like mine.
 

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