Bad days

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Bad days

Postby edado69 on September 14th, 2012, 2:21 am

Last night I have been really wondering what I was doing on this planet. I have been fighting, really fighting, with this so called BFS for 5 years and half. Started with twitches to the right triceps, which got worse and worse. Of curse, I got almost used to them, but truthfully the amount of twitching got overall worse. 2 EMGs, 4 Neuro, visits and EMG spaced by years, all with the same answer. And I do indeed exercise and I do all the rest. But with tumpering twitches like the one I have now on my right side of the abdomen, or flank, to add-up to all the other more random twitches, is a task. In fact, I slept perhaps 8 hours in 3 days. Do not get me wrong, I have no plan to leave the fight, but, sigh, it is tough.
Last edited by edado69 on September 14th, 2012, 3:19 am, edited 1 time in total.
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Re: Bad days

Postby jerry2 on September 14th, 2012, 3:11 am

I am almost a year and I have same problem and it is getting worse also, twitching and the rest. And I can relate about the sleeping. It is hard I know when your abdomen does that, mine does for 3 months now about 50% of the time, day or night :-( I know it is hard. Stay strong, you are not alone!
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Re: Bad days

Postby edado69 on September 14th, 2012, 3:20 am

jerry2 wrote:I am almost a year and I have same problem and it is getting worse also, twitching and the rest. And I can relate about the sleeping. It is hard I know when your abdomen does that, mine does for 3 months now about 50% of the time, day or night :-( I know it is hard. Stay strong, you are not alone!

TKS for your kind words. Yes, we have got to stay strong. A big job and 2 wonderful kids and a wife to take care of...
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Re: Bad days

Postby jerry2 on September 14th, 2012, 3:50 am

I had only one neuro exam and no EMG because I think they will find nothing wrong, I have it to generalised to have anything local. As I have pain/paresthesia/twitching/buzzing/tingling/paresthesia that in a year almost 100% excludes ALS I think, so I don't know what I have and neither do doctors.

For the wonderfull children and supportive wife you have to stay strong. But you have to know at any moment you are not alone with problems, there are guys and gals all over this planet with same problems like you and me. On some confort, you have it 5 years, seems it doesn't kill you, just makes your life more miserable. But you know what, you know what is a good day and appreciate it better than the ones who don't struggle.

Take care, my twitching friend...
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Re: Bad days

Postby Ghayes420 on September 15th, 2012, 10:05 am

edado69 wrote:Last night I have been really wondering what I was doing on this planet. I have been fighting, really fighting, with this so called BFS for 5 years and half. Started with twitches to the right triceps, which got worse and worse. Of curse, I got almost used to them, but truthfully the amount of twitching got overall worse. 2 EMGs, 4 Neuro, visits and EMG spaced by years, all with the same answer. And I do indeed exercise and I do all the rest. But with tumpering twitches like the one I have now on my right side of the abdomen, or flank, to add-up to all the other more random twitches, is a task. In fact, I slept perhaps 8 hours in 3 days. Do not get me wrong, I have no plan to leave the fight, but, sigh, it is tough.


I have two things to say. One, its good to know there are others like me out there that share the same symptoms and aren't that happy about it and a bit confused still. Whose symptoms seem to progress like mine do. So even though your post was meant for you to vent, you unknowingly provided reassurance to others.
Two, keep hope alive bro. You have gotten this far, stick to it! Your family is much more important than worrying about a benign condition, which you obviously have given your length of time. I hope you find peace in whatever way you can. But believe me, I know its easier said than done.

PS- I responded to this post, because like you, my very first fascicualtion was in my right triceps as well. lasted about 3 hours, didnt quit.

Best Wishes,
Greg
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Re: Bad days

Postby edado69 on October 12th, 2012, 2:29 am

What a few days! Twitching is incredibly florid. Legs, shoulders, trunk (my back did well in the past), abdomen, arms. All at the same time and rather happily. A constant "music".
I wake up with something here of there calling for my atttention. Unfortunately, it is just my body.
I wonder how many here have noticed a worsening pattern in the years.
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Re: Bad days

Postby bobajojo on October 12th, 2012, 7:04 am

Edado,
I am only 17 months into BFS. I say "only" because you afer much further along. But I have definitely seen a progression in my symtpoms. I've been to the best neuros in the country and it kind of irks me when they say "you will likely have peaks and valleys with BFS". Peaks and valleys? I only have peaks. Where are my valleys? My twitching is worse each month. There is some new hotspot, more frequent twitching somewhere else, etc. My tongue is the worst for me. It started with a few clear tongue twitches here and there. Then it became more frequent, like a few times a day everyday. NOW, it is *beep* near constant. The front part of my tongue tugs and pulls all day long and I get real fascics all over the sides and underneath. I can show off my tongue twitches at any given time. It is always going. I am quite convinced that it is never going to get better, at least not in the near futre. But the good news is that its just twitches. It drives me crazy somedays, well, most days. But in the grand scheme of things, there are much worse things out there. So I feel blessed in that sense. -Matt
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Re: Bad days

Postby jerry2 on October 12th, 2012, 8:02 am

Matt if you see in my video in another topic I may have a kind of twitch you don't have, if that comforts you ;-)6 Well, it scares me, if Matt doesn't have it, it is beeeepppp bad :?
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Re: Bad days

Postby bobajojo on October 12th, 2012, 8:59 am

Jerry,
Sorry if this comes across as rude, but how the *beep* do you know I don't have that kind of twitch? I really want to know why you believe that you know what I experience from day to day? I get all kinds of twitches. Lots of people on here do. Stop convincing yourselves of things that you don't know anything about.

I just searched for your video and found it. I hadn't seen that thread on here before today. If you run a search of my posts you'll see that I have that exact same hotspot going on. Its a slow rolling twitch in that same area mostly on my left hand. Go ahead and look at some of my posts in September and early October. You'll find them.

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Re: Bad days

Postby jerry2 on October 12th, 2012, 9:40 am

Sorry if this comes across as rude, but how the *beep* do you know I don't have that kind of twitch? I really want to know why you believe that you know what I experience from day to day? I get all kinds of twitches. Lots of people on here do. Stop convincing yourselves of things that you don't know anything about.


Please take my apology. I don't know what you have or don't have. You usually are the one that unfortunately are so unlucy that you can come to the post and say that you also have this tiwtch or had it. I know you would rather not be the one who had all kind of different twitches :-( As you didn't respond on that topic, I wrongly concluded that you don't have it.

My apology again, didn't mean to be rude to you or offend you in any way. And I don't think I can imagine what you are going thru with all the twitches you have, you seem to have so many and I really hope you get any better (I know from your posts the twitches are "progressing" in severity).

Again, my apology. You posted so many posts of videos and I couln't find that kind of twitch you had. I just wanted to be "funny", to find a twitch you don't have and I do. It is kind of black humor, it is not even laughable.

Sorry again, it wasn't my intention.

I searched for the video and found it, but it is wrong one I guess (you have so many) ;-) This seems a fast index moving one not a slow rolling one. http://www.youtube.com/watch?v=gXLrkX5dClU But anyway, it doesn't matter really, won't make me or you any better.
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Re: Bad days

Postby edado69 on October 12th, 2012, 10:17 am

Guys, I really do not know what to say. In one hand, I do not feel weaker and I still do my traning sessions and I am objectively strong. In the other hand, as I said, unquestionably my twitching got worse. At the beginning I almost had to look for the twitching to come, now is there at all times. No nubmess, or clumsiness, or pain (which I had at times). Cramps are quite rare, but I had them as well. Pretty much from the start, I have been taking VitE and B12. Cretinine and creatine at times. CoQ as well, but more seldom. I played with water intake and tonic water. I have my ideas, but I am still looking for something that could stop, or reverse this pattern. Age (yet I am just 42 going for 43, all started when I was just 37) may something to do with, but I am ready to bet genes and env may play a role. Anxiety? Of course, but I bet you not being anxious if someone is "knocking at you" at night or when you are busy with your job. Perhaps I did exercise too much, I don't know. Surely now I keep it easy. Guess what, I am still scared to. I said it before. I wish we could, all of us, try different strategies and come-up with some interesting finding. I hope we will.
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Re: Bad days

Postby TwitchyDoc on October 12th, 2012, 11:46 am

edado, we started at the same time. After 3 or 3,5 years, it got definitely worse. I also checked my MVC (the non-needle part of EMG) and found that I have F wave persistence lower than I had few years ago, which of course added a lot to my worry as F wave has to do with anterior horn cells and for me it got from 100% to 46% (50% is minimum but this is still acceptable). But carbamazepine helped me a lot. If you did not try, definitely go for it. Try 600mg per day, it must help!
Usually, combination of carbamazepine and benzodiazepines works, so its worth a try.
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Re: Bad days

Postby edado69 on October 12th, 2012, 12:35 pm

TwitchyDoc wrote:edado, we started at the same time. After 3 or 3,5 years, it got definitely worse. I also checked my MVC (the non-needle part of EMG) and found that I have F wave persistence lower than I had few years ago, which of course added a lot to my worry as F wave has to do with anterior horn cells and for me it got from 100% to 46% (50% is minimum but this is still acceptable). But carbamazepine helped me a lot. If you did not try, definitely go for it. Try 600mg per day, it must help!
Usually, combination of carbamazepine and benzodiazepines works, so its worth a try.

Not sure about F waves - no surface EMG? Do you mean conduction part? The one that could be also temp related? If you feel F wave pattern has changed (but are you comparing exactly same stuff? Did you do it on yourself by yourself?), what your neuro (an external eye) did think about it? I am just wondering no because I do not believe you, but to better understand. About carbam. I am of the idea that if you've got them (fasciculations) than they are (or may be) expression of an adaptation which cannot be all bad. However, I would like to find a way to stop the process leading to them.How are you doing in terms of physical performances? If you have access to the EMG, did you check what happens after exertion to your EMG?
Last edited by edado69 on October 12th, 2012, 3:04 pm, edited 1 time in total.
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Re: Bad days

Postby bobajojo on October 12th, 2012, 1:04 pm

Jerry,
I hope I didn't come across wrong. I was trying to show how your mind convinces you of things that aren't true. It is clear from your post that you believe you are the only one who gets that type of twitch. Not true. I get them, Bill gets them, and I'm sure countless other people on here have that twitch just like in your video. In the video you posted of my index finger. That twitch was just a random hotspot. That is nothing like the slow rolling twitches that I get nearly every day in that area. -Matt
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Re: Bad days

Postby edado69 on October 13th, 2012, 4:10 am

Any of you has tried melatonin? Any feedback on it?
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