It just doesnt seem to add up anymore

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It just doesnt seem to add up anymore

Postby will97 on January 29th, 2014, 3:35 pm

I have been going litteraly crazy this past month and it seems to just be getting worse.

Have any of you hhad twitches in 2 muscles at the same time in the thigh? This has been happening to me. I have been having twitches on the outside thigh muscle for the past 10 days or so and today it keeps on going but the outside thigh muscle has started to twitch as well. So my right thigh feels really weird.

In addition, I have severe elbow jerks and twitches on the left side and my lip/chin twitch has come back for teh past 2 days.

I am confused, because I dont know if its a good thing that I twitch/jerk at different places at the same time or is it a bad thing? What is going on with me???

:(:(:(
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Re: It just doesnt seem to add up anymore

Postby MarioMangler on January 29th, 2014, 3:51 pm

What is going on with you is you have BFS. That is pretty much what BFS does. It will mess with you, and if you stress over it it gets worse, and you get more twitches, but in the end it is harmless.

Remember, your enemy isn't the twitches. Your enemy is your interpretation of the twitches. What you think is going on with you will 100% determine how bad your symptoms are going to be. Always remember that.
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: It just doesnt seem to add up anymore

Postby will97 on January 29th, 2014, 3:59 pm

I have been patient, I told myself a 100 times this past month that its just BFs and that tomorrow the twitches will be gone ... but its not true, they are still there and they are getting worse.

I am honnestly starting to fall behind the race and not see the light at the end of the tunnel anymore ... I am so scared ... I am starting to believe again that its not just BFS anymore and that it has progressed to something worse ...

I know, I am a mess ... sorry but I am just saying out loud what I feel and its not a good feeling :(
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Re: It just doesnt seem to add up anymore

Postby Gamindsoc1509 on January 29th, 2014, 4:03 pm

Your first problem is that your saying 'tomorrow the problem will be gone' then you are anticipating them to go.

They won't just dissapear cause you say 'it's just bfs'. They will slowly fade out as you stop paying attention to them.
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Re: It just doesnt seem to add up anymore

Postby Gamindsoc1509 on January 29th, 2014, 4:03 pm

Your first problem is that your saying 'tomorrow the problem will be gone' then you are anticipating them to go.

They won't just dissapear cause you say 'it's just bfs'. They will slowly fade out as you stop paying attention to them.
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Re: It just doesnt seem to add up anymore

Postby leaflea on January 29th, 2014, 10:43 pm

This thing is so closely tied to emotional state. I"m beginning to think the twitches are a barometer for how we are doing. They tell us we are anxious or sad or upset even before it has registered that we are. Read the old vets, everyone has setbacks. Two steps forward, one step back.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: It just doesnt seem to add up anymore

Postby MarioMangler on January 30th, 2014, 3:02 am

Bingo. That's all there is to it.
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: It just doesnt seem to add up anymore

Postby will97 on January 30th, 2014, 9:43 am

It's a new day and yet things are not better at all ... still have the twitches in the right thigh (both muscles) and teh elbow and chin/lip as well. In addition, today my left thigh started to ejrk as well ...

I feel like I am beeing burried by an avalanche :( not cool at all!!! :(
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Re: It just doesnt seem to add up anymore

Postby will97 on January 31st, 2014, 9:03 am

Unfortunately I am not doing better today ... fasics are still very much in both thighs and my right arm (elbow to shoulder area) ... I have massive thumpers and jerks in my thighs with severe cramps ... I am so scared that I dont just have bfs :(
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Re: It just doesnt seem to add up anymore

Postby emmie.s on January 31st, 2014, 10:09 am

I'm so sorry that you're going through a rough patch. I'm sure your anxiety is really ramping up your symptoms. As you know, bfs ebbs and flows and anxiety makes it worse. It's clear you're really frightened right now, and maybe a visit to your neuro for reassurance, especially if you haven't been in a while, would be helpful.
However, given the fact that you've had issues for so long without weakness really should reassure you.
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Re: It just doesnt seem to add up anymore

Postby will97 on January 31st, 2014, 10:48 am

Thanks Emmie for your response, you are right I am in a rough patch and everyday I say to myself that tomorrow will be better but its not.

About 2 weeks ago, I got a call from my neuro clinic and they told me that my neuro (and she was good) has left Canada and moved to the USA and that she has left the medical practice all together. I believe that she was so involved that she needed to get away from all this and start a new life ...

This is also something that I would like to do. so right now I have no neurologist and my 6 month follow-up EMG which was scheduled for early march has been pushed back to late april ... but no neurologist has been assigned to me as yet which is not reassuring :(

I am sooo trying to control my anxiety and I believe that I am doing an ok job, but the fact of the matter is when I see and/or feel twitches and jerks everyday non-stop well it just gets to me.

Its been almost 2 years (in march) that I will be a ''twicher'' but, I read an article (and tests were done) that doctors cannot actually label you as having BFS before at least 4-5 years have passed ... there were some patients that had fasiculations and clean EMG's and that a few years down the road were diagnosed with that dreadful MND. I am absolutely not trying to scare anyone ... I believe that I scared myself enough ... but in any case here is the link (its a PDF file) so you need to click on the second link and it will download a pdf file.

So with my condition getting worse over the last month, losing my neurologist and now having come accross this article ... well lets say that I am kinda frightened and feel alone ...

Thanks for your support guys!!!
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Re: It just doesnt seem to add up anymore

Postby will97 on January 31st, 2014, 10:49 am

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Re: It just doesnt seem to add up anymore

Postby christo on January 31st, 2014, 11:54 am

Will, they have 4 cases (and everything is not clear in this report), we have almost 5000 who have nothing but a big fear of ALS. Which one do you want to believe ?
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Re: It just doesnt seem to add up anymore

Postby J4son on January 31st, 2014, 12:16 pm

Plus these four patients seem to be suffering from Cramps and fasciculation, maybe something similar to Cramp Fasciculation Syndrome (CFS) not BFS. The 4 or 5 years might then apply to CFS diagnosis not BFS. I’ve read many times that cramps in rare cases might be the sign of early MND, or at least might be more indicative of MND, but concerning fasciculation alone we have tones of literature saying that after 7 or 8 months or with one EMG patients can be reassured. No need to keep repeating the same things over and over.
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Re: It just doesnt seem to add up anymore

Postby MarioMangler on January 31st, 2014, 12:46 pm

I read an article (and tests were done) that doctors cannot actually label you as having BFS before at least 4-5 years have passed



Well here is a better way of looking at that. I read an article that doctors cannot actually label you as having MND before you have actual MND symptoms.

You don't have any MND symptoms.
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: It just doesnt seem to add up anymore

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