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My worries

PostPosted: July 2nd, 2003, 7:58 am
by Pole
Hi everybody !

From the start I want to assure you that I don't want to scare anybody. All I want is to tell you about my fears. I also hope that some of you will tell me that I am not right (and why).

My fears are related to hyper-irritation of muscle cells or nerve cells - I have read that it may be a reason of all what we call BFS. It seems to be logic - when I feel twiches, they do not resemble dying muscles - I feel like my muscles are more active.

I visited teleEMG website. There was one question (and answer) that scared me a lot. The question was about "insertional activity" - activity of muscle fibers recorded as a reaction for a needle. The neuro answered that was not a pathological reaction and may be due to hyper-irritation of muscle fibers or muscle cells.
He also said: "Hyper-irritation often goes before denervation but hyper-irritation alone has nothing to do with ALS".

So there is a possibility that in ALS first comes hyper-irritation and after that denervation, weakness and fasciculations due to dying muscle. Maybe twiches that I feel are now really from hiper-irritation (which may but not must be a first sign of ALS) and that is why my neuro exam and EMG were clear. And that is why I do not feel weakness so far.

And maybe that is an explanation of these famous 6.7%? In these cases first sign was hyper-irritation of nervous system and muscles and twiches occured without any other signs.

In this theory (which is fortunately only MY theory) some of people who twich only without weakness may be these cases of ALS patients whose first reaction from the nervous system is hyper-irritation.

But still most of them (us) are BFS twichers.

What do you think about that??????


PostPosted: July 2nd, 2003, 8:40 am
by Jenn311

I think you are looking for stuff that is going to convince you that you will develop ALS in the near future, which is extremely unlikely, as cited by the Mayo Study. You need to stop doing internet searches and start finding ways to deal with your anxiety! If you keep stressing, your twitching will never be reduced.
No one ever knows if they are going to develop ALS in their lifetime, or for that matter, how they are going to die. But as one poster put it, "Living in fear of having a deadly disease and actually having the disease are about the same thing to me". So why waste the precious time you have on this stuff? Find a way to be at peace with your mortality and enjoy the time you have left.
Love, Jen

PostPosted: July 2nd, 2003, 9:39 am
by kim
Hi Pole!

My opinion is that you should stay off the internet! You will always find some "theory" or "story" that could make you believe that you have something very bad going on.

You have been very free in telling Kerri that she needs psycho therapy. Have you considered it for yourself?

It was beneficial to me, and it has helped me come to terms with my fears and obsessions.

I don't know for a fact that BFS is caused by anxiety, fear, or OCD. But I do know for a fact that once I went on Zoloft and saught therapy, my twitching came to a screeching hault down to VERY normal amounts! It's only when I read something or hear something that triggers my ALS fear again that the twithching increases.


PostPosted: July 2nd, 2003, 9:59 am
by Pole

thanks for responding.
I have never said Kerri that she needs psycho therapy.
And I would you to know that I meet a psychoterapist but results are quite poor so far.


PostPosted: July 2nd, 2003, 12:09 pm
by Arron
Pole, quit looking for reasons to convince yourself you have something you don't. Like the answer said, "Hyper-irritation often goes before denervation but hyper-irritation alone has nothing to do with ALS".

Read that answer carefully. It pretty much appears that you do not have ALS, so with that, and the last few words of that answer being "...but hyper-irritation alone has NOTHING to do with ALS".

You are choosing to scare yourself by reading things that seem to have nothing to do with your case scenario. There are a LOT of things that happen to your body, both before and while ALS is running its course that have nothing to do with BFS. Not being able to move is one of them and dying is the other! Can you still move freely? Is there anything you used to be able to do before your twitches started that you can no longer do? I'm not talking about the ever so common exercize intolerance either, I am talking about not being able to go up stairs, having trouble kneeling down or spreading your fingers, opening and closing your mouth to brush your teth... that kind of stuff. I'll be the answer is NO. You have nothing now that you couldn't do before your twitches started... am I right? If so, relax and quit searching for things to scare yourself into thinking you have something that you have no signs of, OK? :)
Pull out of it buddy, you can do it! Try to think positive and look at the many of us that have the exact same thing as you (for years) and are still just fine, OK?

PostPosted: July 2nd, 2003, 12:35 pm
by jcavan4125
Hi Pole,
I agree with everyone else that you are scaring yourself for no reason. Hyper-irritability is a term used to describe EMG activity not muscle activity. The fasciculations you are experiencing can be and sometimes are described as peripheral nerve hyper-excitability, but that is not the same thing as hyper-irritability. Hyper-irritability is the EMG changes that occur on screen when the needle is first placed into a muscle. This is sometimes a pathologic sign, but not always!! You tell us that you have had a negative neuro exam and a negative EMG. That means that all of the evidence points to you having BFS not ALS.
How do you think the syndrome of benign fasciculation came to be? Do you think that doctors just decided to create a new entity? No, of course not! It was found that there were people that presented with complaints of fasciculations in the absence of weakness or progression that had no evidence of ALS. If these people were found to eventually progress to ALS, then BFS would never have been created. Since ALS (as a diagnosis) has been around much longer than BFS, the medical community has had ample time to follow the natural history of the disease. Clearly, there were groups of patients in sufficient numbers that varied greatly enough from NMDs (due to the lack of weakness or progression) that a new entitiy must be created to properly describe this group; hence BFS came to be!
Try to accept that and move on!

PostPosted: July 2nd, 2003, 1:06 pm
by kim

I apologize! I got you confused with Uber! :oops: I am sorry if I have offended you.

I still believe that it would be best for you to stop doing research on the net, and focus on more positive things!

Sorry again for the mistake!


PostPosted: July 3rd, 2003, 2:26 am
by Pole
Thanks for responding.
Arron - you are right - now I am able to do everything what I was able to do before.
Joe - I believe that you are also right telling that hyper-irritability is only the EMG term and our problem is hyper-excitability what is completely diffrent thing.
Kim - don't worry :) I know that I should stop searching internet, but it is sometimes stronger than me.

You help me a lot. Thanks.