Update on me

Information about how to manage or reduce the severity of BFS symptoms

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Update on me

Postby Antologia on October 6th, 2014, 4:43 am

I got some private messages because I said I would be back in september after my appointment with the neuro, and I didn't ;-)

So, I tell you why...

In August, I found out I got pregnant of my 4th child (unexpected). I never got the invitation of the hospital for another appointment, and because of the pregnancy I didn't get after that. My symptoms didn't really change during summer, which means they didn't got worse or less. I got my sneeze-reflex back after 6 weeks, but got an incidentally tongue twitch back for that :-) A real twitch, not the "bag of worms" I already had, but a real twitch I can feel clearly like I feel twitching in the rest of my body.

My plan is to focus on this pregnancy for the next 6 months. Try not te worry about the fasciculations and other symptoms and just see what happens. I just can't use any fears right now. When the baby is born, I'm almost twitching for 2 years then. We need to go to 5 years to be really really sure, but 2 years and no signs of ALS is a long time.

The only strange thing is, that compared to my last pregnancy in 2012, I could feel my baby kicking. Now I don't know if the baby is kicking, or it's just my abdomen that are twitching :( It feels exactly the same...

Good luck for all of you, try not to worry too much and I will be back if there are any changes on my situation, good or bad, I promise.
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Re: Update on me

Postby Yuliasir on October 6th, 2014, 6:05 am

Babies do not kick until the 4th month, so if it is before that term, it might be twitching :)
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Re: Update on me

Postby Yuliasir on October 6th, 2014, 6:07 am

by the way some ladies report that pregnancy has positive effect on the mood disorders (I am among them) due to high oxytocine level. Wish you this 'milky peace' time! :)
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Re: Update on me

Postby Antologia on October 7th, 2014, 2:15 am

I'm 4 months now, so could be kicking and twitching both ;-)

It's true that I have less fears now, so I hope it stays like that.
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Re: Update on me

Postby Tweek on October 7th, 2014, 2:26 am

We need to go to 5 years to be really really sure, but 2 years and no signs of ALS is a long time.


Five years ?!
I think that one year after the apparition of the first twitches without any clinical weakness is more than enough to rule out ALS.
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Re: Update on me

Postby MarioMangler on October 7th, 2014, 9:53 am

Correct. Five years I'm sure is a nice round number to reach for but one year and especially two years are more than enough.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: Update on me

Postby Tweek on October 7th, 2014, 10:58 am

Or you can wait 80 years to be really really really really sure :mrgreen:


Seriously speaking : even 6 months is enough. Studies sometimes mention 4 months.
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Re: Update on me

Postby buddyroxy on October 7th, 2014, 12:00 pm

I like your comment, im at 6 months now
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Re: Update on me

Postby Antologia on October 13th, 2014, 8:40 pm

Well people, we had this discussion before a year ago, but that is what my neuro told me: time is your friend in this. The longer you have no clinical weakness as time goed by, the more we can be sure it's not ALS. But after 5 years it's 100% sure. Before that it might be 96% or something.

These are the words of my neuro, not mine. So thats why I say, after 5 years I can be really really sure. After 2 you just can be sure. You know what I mean?

On the ALS forum I read in the beginning, there was one guy who twitched for 3 years before they could diagnose him. I do not say this to scrare anyone, I do think that when your twitching for one or two years without clinical weakness or a bad EMG, you do NOT have ALS. But I also can't forget the words of my neuro about those 5 years, so I can't wait untill it's 2018 :-)
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Re: Update on me

Postby veryworried123 on December 29th, 2014, 2:07 am

wow another one of those wait 5 years until your 100% ok

awesome

thanks
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Re: Update on me

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