9 Year Check In

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9 Year Check In

Postby seanrblock on August 26th, 2014, 7:30 pm

Hi All-

I wanted to check in with everyone to give those who worried endlessly like I did some hope. I was a VERY frequent visitor to this site for several years, my twitching and cramping started in my legs. I have seen so many different neuros and had more than 10 EMGS. My visible twitches and cramps were so bad that they refused to give me a BFS diagnosis until a year of symptoms and follow up testing. So I have twitched in my left foot arch since 2006. All of my ab/calf cramping have completely stopped.

As with most of us I had tried to move on and ignore my symptoms until the ice bucket challenge started. Now my foot is going bonkers non stop and I am Googling like I did in my freakout days. You would think that after all these years and negative tests I would not worry. I guess I just can't believe my left foot arch can twitch non stop for 9 years and it's fine. So I want you all to know that it's normal for twitching to not stop and to occasionally get worried again. I would encourage you to click on my user name and read some of my neuro visit notes, I would take a pen and notepad with questions and then post them here to help others. I hope that my experience can help someone. I remember the days when I didn't think I would see my kids start school and here I am with them still. Hang in there, I know everyone has good and bad days with this.
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Re: 9 Year Check In

Postby Capital H on August 26th, 2014, 8:02 pm

I know. This Ice bucket challenge guff has brought it all back to me, I have not been to this forum for many a year but I have somehow drifted back here, more out of a sense of depression than anxiety now.
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Re: 9 Year Check In

Postby leaflea on August 26th, 2014, 8:29 pm

Sean, thank you so much for your update. It is an encouragement. While wonderful, the ice bucket challenge has led me to click onto links and stories that I think will reassure me. Some have, and some haven't. So, I come back here and remember clean neuro, clean EMG = no als. While my symptoms mimic many stories, I doubt they had clean clinicals...Look at it this way, if your twitches were not benign, your foot would be gone by this time. I mean, if these twitches were as damaging as they feel, we'd all see something by now! Right?
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: 9 Year Check In

Postby veryworried123 on August 26th, 2014, 11:06 pm

Thanks for the post

I'm doing my best to avoid those stories as it just stresses me out
I can't believe after all this time you are still worried

I guess that's the fear

Thanks again
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Re: 9 Year Check In

Postby veryworried123 on August 26th, 2014, 11:20 pm

Also can you tell us why they refused to give you a bfs until after one year even after so many emgs

I thought one is all you need regardless of twitching and cramping

How bad was your cramping / twicthing
And where was it


Also any other advice
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Re: 9 Year Check In

Postby twitchmebaby on August 27th, 2014, 12:22 pm

Good to hear from you. I recall you were araound when i started here as I just had my 8 yr. check in. I followed with my neruo beginning of this year after taking a 5 year break from him. Usual strength test and exam, all fine. My fascias are ttoally visible. He has never wanted to do another EMG after the ones in the very first year. Funny too lately it has been my foot cramping driving me nuts. Just keep on keeping on.
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Re: 9 Year Check In

Postby Chris_uk on August 28th, 2014, 2:17 pm

Back on here too.... Been years for me and I still twitch about 500 times a minute in each calf.. Just wanted people who twitch to know that without anything else twitching is nothing. Search my old threads, you tube videos.. You won't twitch like I do
. And I'm still here stronger than ever.
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Re: 9 Year Check In

Postby Capital H on August 28th, 2014, 3:42 pm

It is a mere 7 and half years since I found this forum at the height of despair and diagnosis by Google. One thing I did learn to stop doing long ago and I am the better for it, is all the relentless self checking and monitoring, sticking my tongue out in front of the mirror, looking for Babinski reflexes (can't even remember what that is now) standing on one leg and all that ridiculous junk or so it seems now.

Won't say my life has been easy as I have had times of crippling anxiety since then and the odd bout of depression, but I am still alive and growing vegetables rather than pushing up daisies.
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Re: 9 Year Check In

Postby Pascal35 on August 28th, 2014, 4:43 pm

Hi,

I think the Ice Bucket Challenge is a great way for people to get aware of this disease... In the meantime we will get more people like us (a bit crazy i would say) in this website to share their stories and help us feel more secured and confident!!!
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Re: 9 Year Check In

Postby RachelLee on September 1st, 2014, 6:46 pm

Haha, I kinda feel bad at laughing, but I'm just like ya'll - the awareness of ALS from the ice bucket challenge...I have been aware for the past 5 years. I studied up on everything and freaked out when I was 16 years old, and now I'm 21 and in college. And yes, every once in awhile I freak myself out, I wonder "What if..." and then I come on here and try to remind myself that I don't need to freak myself out like that.
"For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind."
2 Timothy 1:7
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