Check in/Top 10 pieces of advice from a twitching veteran

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Re: Check in/Top 10 pieces of advice from a twitching veteran

Postby raindog on June 24th, 2012, 6:52 pm

Andy your post should be made a sticky and carry this warning

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:D
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Re: Check in/Top 10 pieces of advice from a twitching veteran

Postby SuziQ on June 25th, 2012, 10:31 am

raindog wrote:Andy your post should be made a sticky and carry this warning

Image


:D

ITA! Stickyworthy, indeed!

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Re: Check in/Top 10 pieces of advice from a twitching veteran

Postby AndyTwitchalot on June 27th, 2012, 1:48 pm

Ha, I'm psyched you guys got something out of that. It was kinda therapeutic to me as well, just summarizing everything that has taken a few years to sink in.
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Re: Check in/Top 10 pieces of advice from a twitching veteran

Postby tiggida on July 5th, 2012, 9:47 pm

Wow, thanks so much, that is one of the best stories I have read!!
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Re: Check in/Top 10 pieces of advice from a twitching veteran

Postby Lifewithbfs on July 27th, 2012, 5:38 am

Very good Post Andy, I been crying every single days .
no one understand what I am going through , have small kids, want to give them time but can't able to give good time always in worry , I do going try all things above , but symptom are more like to have all abnormal , which make me more anxiously , slp when I saw my Nero , he side right now BFS nothing , but then silenced , that made me think , why he had one silenced moment , all the family history he was asking made me more bad , my family dosent have any neurological problem :roll:
Soory , and thank you for reading this post for me
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Re: Check in/Top 10 pieces of advice from a twitching vetera

Postby AndyTwitchalot on April 7th, 2015, 9:21 am

Hey folks-- bumping this "check in" thread instead of creating a new one. Just wanted to pop in to say hi.

My symptoms have continued to get worse-- this winter was the first time that I couldn't shovel. Living near Boston, that was tough this year. And obviously the twitches are still going off all the time, daily. But that's old news at this point.

Here's the good news-- I just had my first EMG in several years, and it was totally clean. That means I've had this condition, whatever it is, for 8 and a half years, and there's no sign of any motor neuron disease on the EMG. It's not ALS. I'd like to know what the %#[email protected] it, but it's definitely not ALS.

This new doctor I'm seeing wants to try some new tests. He asked me to work out vigorously, then come in for blood work 6-10 hours later. I'm a little nervous about this, since I know I will pay for the exercise with days and days of pain and fatigue, but I hope it will get me closer to an answer.

Hope everyone here is doing okay. Cheers!
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Re: Check in/Top 10 pieces of advice from a twitching vetera

Postby leroyb on April 7th, 2015, 10:07 am

I'm a weird case for sure, reassuring in some ways, and not so much in others. I started twitching about 5 and a half years ago, and I've since progressed to having worse symptoms, but not an MND. So I'm in the worse-than-BFS, better-than-ALS spectrum.


Thanks for post Andy. This is also where I am - somewhere on the scale. One of the best neurologists in Europe told me I 100% do not have ALS. In her words "We are better at telling you what you don't have then what you do have. In other words they just don't know sometimes.
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Re: Check in/Top 10 pieces of advice from a twitching vetera

Postby Ghayes420 on April 7th, 2015, 10:56 am

I was a bit discouraged when you said "I couldn't shovel"

In what other ways are you limited physically?

Have they ruled out Kennedy's disease as well? Curious if they are just sticking with a dx of BFS?

Congrats on your clean EMG, that is great news and a huge relief I am sure.
A very proud fasciculator since 8/14/2011. :)
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Re: Check in/Top 10 pieces of advice from a twitching vetera

Postby AndyTwitchalot on April 7th, 2015, 11:21 am

leroyb wrote:
I'm a weird case for sure, reassuring in some ways, and not so much in others. I started twitching about 5 and a half years ago, and I've since progressed to having worse symptoms, but not an MND. So I'm in the worse-than-BFS, better-than-ALS spectrum.


Thanks for post Andy. This is also where I am - somewhere on the scale. One of the best neurologists in Europe told me I 100% do not have ALS. In her words "We are better at telling you what you don't have then what you do have. In other words they just don't know sometimes.


Yup. That's where I am. They can say "not MS, not ALS, not blah blah" but it's a when it comes to "so...what is it?" I get a whole lot of shrugging shoulders.
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Re: Check in/Top 10 pieces of advice from a twitching vetera

Postby AndyTwitchalot on April 7th, 2015, 11:28 am

Ghayes420 wrote:I was a bit discouraged when you said "I couldn't shovel"

In what other ways are you limited physically?

Have they ruled out Kennedy's disease as well? Curious if they are just sticking with a dx of BFS?

Congrats on your clean EMG, that is great news and a huge relief I am sure.


I basically can't exercise or play sports. Most of the things I can technically do, I just pay the price afterwards. For example I can swing a baseball bat, but if I do that too many times, a few of my fingers will stop working after. I was able to shovel at first, but after doing it once, I wasn't able to for the next few days. Eventually the strength will come back, it just takes time. And I used to play drums, but nowadays my arms would get too exhausted and I would have to stop after a few songs. Back in the day I could play a full show for 90 minutes or so.

Day to day life is fine, and most people wouldn't think anything is wrong with me. But I also sit at a desk for most of the work week. If I was in a more physical job, I would be out of work, which is discouraging to think about.
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Re: Check in/Top 10 pieces of advice from a twitching vetera

Postby Buzznerd123 on April 9th, 2015, 3:13 pm

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Last edited by Buzznerd123 on May 1st, 2016, 12:09 pm, edited 1 time in total.
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Re: Check in/Top 10 pieces of advice from a twitching vetera

Postby veryworried123 on September 8th, 2015, 4:10 pm

great post

thanks
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