Anxiety and Fear about ***

I'm still full of anxiety and fear about developing ***, although I've been at a Neuro and passed the default exam and had 2 clean EMGs. I am still twitching in my left arm and meanwhile it starts in my right arm as well and has moved to other parts of my body. I don't want to bore you with the other symptoms I've developed meanwhile.

Anyhow I am wondering ...

Why do I trust more in story found in the internet, posted by a friend of a friend telling that despite clean EMGs and other stuff a friend of this friend developed ***. Why is this scaring me, although I do not know this person, nor the friend, nor whether there is any truth in it. Why does it bother me at all?

Wouldn't it be much more logical and easier to believe my Neuro, knowing me personally and having looked at my symptoms. The doc that made the exam and the EMGs. The person I talked to about my fears and the one who told me, that due to his results the chance of having *** is 0%.

I have no answer to it. But I think, the answer might provide the way out of the nightmare as well.

Carmen

The reason why you are having this trouble maybe due to the fact that you/somebody you know was also once told that it is not a certain disease only for it later to develope exactly to this.
This is the case with me. A dear friend was told he hasnt got MS with a certain probability only for it to develope exactly to MS 2 Years later.

Another reason is that things are happening with your body that are completely new to you. You cant explain them and nobody has told you how they can be treated (medication etc.).
This is the case with me also. I have this zillion twitches per day nobody else i personally know has them and it is really hard to convince oneself that this is normal.

Another reason lies within the human nature. Nobady wants to get really sick and if one shows signs (even if not related) with diseases that are quickly fatal then it is only normal to get worried sick. it then looms over once head "maybe all are wrong", "medical mistakes do happen", "i know my body better then anyone else and this doesnt feel right".
I feel this way also.

I used to think that i am a really hard rock and nothing could brake me easily. Well think again. I am probably more like jelly. Even the slightest concern throughs me now off.

What you are experiencing is absolutely normal. This definetely is not a character mistake you have. All of us here have it. Try taking it day after day, remembering yourself that you have nothing, thinking positive, doing something good for yourself day after day.

This is a very nice question you posted. I guess you have a very nice character and you are trying to understand yourself better.

Edited: Ohh i just saw you live in Germany. I thought that only we here in small Austria do Twitch ( ) ) whereas you there in Big Emilyomousey have other worries. Yes EyeoftheWild you in Canada do twitch also. I know i know.

Carmen,

Concerning that story you mention, two things--

First, this person obviously had something suspicious going on to earn multiple EMGs. I higly doubt it was twitching without weakness for various reasons. A clean EMG is not the true test for ALS, you must also have a clean clinical exam (which this person probably did not).

The second thing... there seem to be more false accounts of BFS turning into ALS (several I've seen) as opposed to real accounts of BFS turning into ALS (none I'm aware of). So... personally, my default reaction is to be suspicious of such stories.

Dave, what do you mean by a "clean clinical exam"? Do you mean the standard exam Neuros used to do, like checking reflexes, let you stand on one foot, strength tests, etc.?

Thanks
Carmen

yeah that's what i mean. the stuff he does in the office like checking for weakness and reflexes.

Alex -

Your theme is becoming familiar. You cite that it is "normal" to feel as if you are destined to die, and have a more sinister disease than BFS, then wind up telling people to just "ignore it". We get it. So before every thread I/we open up resounds with the same theme, I would ask again you evaluate whether you really feel that your current mental state about this is "normal", and whether adding the same post to every thread is helping. Another named Eric once did the same thing - he believed we all had lyme - and at the end, he eroded ANY credibility he may have had and ANY chance he may have had to actually help those who might have. It simply boiled down to people growing tired of hearing it over...and over.

From your moniker (which drives half the people on here insane though not everyone wants to take the time to tell you so) to your outlook, I think we well understand at this point where your head is at. As I've stated before, you are entitled to whatever viewpoint you want. However, the recurring post that starts with "well you probably feel scared because of the two people I heard had this..." or the "I had a friend that had that happen to him..." is not only turning some off, but is not accomplishing what I think you are trying to accomplish, which is to HELP.

From my humble point of view, dreading every twist and turn your body takes is not at all "normal". I know, because I've suffered with this type of hypochodriasis for years. I'll be the first to admit I had no faith in a "BFS diagnosis" for many months, and even questioned the existence of such a thing for a long while, for I KNEW my body couldn't feel this way without a more clinical explanation. I'd dare say also that there was a time when each and every one of your recent posts would've easily thrown me deeper into that unhealthy mental tailspin. And I KNOW now this is anything but "normal". So from my perspective, I am concerned about you, and I am asking you again to look in the mirror and evaluate whether the "advice" you are giving is helping drive people in the right direction, or is just driving people nuts. And no, throwing in a joke at the end of the post does not cure the first 95% of it.

I'm sorry to be so blunt, but I DO sincerely think you care, much unlike others who've come on here for a short time, spewed all sorts of negative mumbo jumbo, and then departed as quickly as they came. They grow tired - the pleasure of spreading their "pain" with others is not as fulfilling as it once was, and it grows old. So they leave. And I'd dare guess they are no better off personally than when they came. Do yourself a favor and get to the root of where your skepticism and doubt comes from, and grab a hold of it. Choose that course versus one of attempting to "surround yourself" with others who might feel the same as you do now. In all cases, you are better off getting to a positive, healthy outlook on things, and to that end, I would dare say no one would disagree, not even you.

Respectfully,

JG