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Mark One Year

PostPosted: August 19th, 2014, 10:23 am
by Steph
Hi all,

As a newbie, I always found the updates and anniversaries reassuring, so I am sharing my one year anniversary story. My twitching started last August after difficulties swallowing following a dental procedure led me to research ALS. I should also note the few months leading up to this had been an incredibly stressful time (moved, my husband and I both changed jobs) A couple of days after reading about fasciculations, I had them EVERYWHERE. Persistent big thumpers in my left hamstring, small vibrations in my feet, twitches in my abdomen that felt like I was with child; the list goes on and on. I ran to my GP who diagnosed me with GERD and anxiety and then, unconvinced, went to a neuro who completes all of the EMGs (trained at Mayo) and ALS evals for a large teaching hospital. She again diagnosed anxiety. In mid-October I went back to her and demanded an EMG because I had seen no decrease in my symptoms. She relented. The EMG was clean. I was relieved, but still not completely convinced. Since that time I have have experienced nearly every odd symptom out there.

parathesia- both in small quarter sized spots (my scalp is particularly prone to these) and entire limbs
internal vibrations- it feels like my entire body is shaking as I lay down to sleep
shaking muscles- I shake like a leaf after holding almost any yoga pose for a few seconds
sharp pains- I get random sharp/stinging pains throughout my body that last only a few seconds
numbness- arms/legs/glutes (even abdomen) after staying in the same position or putting pressure on them for a while
muscle soreness/stiffness- tight, stiff, sore muscles
trembling/tremors- at my worst I had a persistent upper lip tremor
twitches- at this point, I don't think there is a muscle on me that hasn't twitched

I am sure there are other symptoms I have forgotten. But, the good news is all of them wax and wane. I have not lost any real strength or abilities and can function normally. Every time a new symptoms appears, I regress for a while, eventually accept it, and then it disappears. I wish I could say I no longer have any fear of the neuro nasties, but I do still have my moments of doubt. However, it has been one year, I am still here and still able to do everything I could one year ago. So when I think rationally, I know I am just fine and you will be too.

Re: Mark One Year

PostPosted: August 19th, 2014, 12:03 pm
by trustme78
Hi Steph,
for me too the anniversary posts are immensely helpful when I have moments of doubt. I am looking forward to my own and I would like to thank you for yours.

Good luck to you. See you next year.

Re: Mark One Year

PostPosted: August 20th, 2014, 12:24 am
by leaflea
Thanks Steph, you and I share many symptoms. I will get to one year in October. This time last year was the most stressful in my life up until then, made the earlier stuff look like a walk in the park until the twitching and everything else started. Those who have only twitching think we make such a big deal of it. It isn't the F of bfs, it is the S of bfs which is pretty much everything else. I made a list like yours at 8 months. We have a lot of strange, mysterious stuff, but we are fine!

Re: Mark One Year

PostPosted: August 20th, 2014, 1:49 am
by Crampydr
Thanks, I too found that helpful.
For me too, it is the muscle pains, tightness and cramps which get me the most fed up...