Living with Fear of Bulbar ALS

[RockSolidGuy89]

I am a moron.You are probably tired of hearing the story - first remember twitches when I was 15/16, thought nothing of it, they came and went for many years, only when I consulted google last year did I have a meltdown, clean EMG and still I now worry about bulbar symptomswhy? because the fear of the disease is in my head and it's a hard thing to shift when you get twitches around the lips/chin for example and obsessively focus on swallowing/speaking etcmy latest update is that my swallowing seemed to be back to normal for a few weeks, of course then I decided that my mind needed something else to worry about so I started thinking about my speaking and pronunciation and now I am feeling tight throat again and well - this is all rather pathetic really, I am letting this control my life even though I am almost certain I don't have the thing I fear, almost is the key word hereso that's why we all fear the worst I think - we are looking for certainty and we'll never get it so are we doomed to continue to fret and stress about every preceived, imagined, somotized or unrelated symptom for the rest of our lives? I don't think that should necessarily be the case - most of my life I have had peace of mind, i tend to go through periods of intense anxiety and then I just get so fed up with the anxiety that I almost say to myself "well, come and get me then (whatever the thing I fear is), anything is better than this, do your worst" - and then a little time passes and the symptoms don't really worsen and it gradually fades away until I find something else to worry aboutI think a key factor in combatting this health anxiety is finding something to do, some kind of purpose or task or duty that takes your mind off it and gives you a certain sense of fulfillment, the mind will tend to wander to these dark areas if you are not stimulating it with healthy purposeful workI mean, it's incredible to me how many people on here have had their symptoms "flare up" after consulting google, I must have read that in at least 100 stories on here, it's also incredible how many people have a history of anxiety or hypochondria or OCD, it's incredible how many have young families, and I am sure there are other predictorsWhy do we all fear the worst?I am coming to the conclusion that it's because we have nothing better to do, so it's about time we found something better to doThere is no certainty - we need to get over thatwe're all going to die - get over thatThe huge likelihood is none of us have ALS - we need to get over thatbut anxiety is a really hard thing to lose especially when something so toxic and overwhelming and all-consuming enters your head and especially when there are no explanations for the myriad of weird symptoms other than "anxiety" "stress" "wait 6 months - it's probably nothing"I am writing all this and I still have a nagging little doubt, what if I am a rare case, what if I am on the slow road to bulbar etc etc - how do we guys get out of that unhealthy mode of thinking? that's what we have to do - when all rational thinking would suggest otherwise why do we let the tiniest of possibilities become such a huge weight upon us? Being a worrisome burden on those around me is getting old - I am not sure what I need in order to get beyond this, a tongue EMG, visits to more neuros, a new project to focus on, medication, meditation, alcohol, counselling etc - it all seems so unnecessary - I wish I/We could just tell ourselves it's not bad and believe it - how can that be achieved? Or is that that problem - the need for reassurance/certainty - should we just accept that in life there are certain things we can't control and be at peace with that reality because if we don't accept that harsh reality then we are destined for a pattern of constant health anxiety and stress

 

[DanceDuck]

My problem isnt that I worry about having some kind of life threatening disease but that these constant twitches all over my body non-stop annoy the hell out of me and I find it hard not to focus on them, especially when they get really bad like this last week which I assume is because I have a bad head cold and my immune system is fighing that virus off. Im hoping that as time goes on that I can learn to ignore the twitches and find some way not to think about them. I have to admit that I am a hyprcrondriac too and I have suffered from health anxiety since I was a kid. That really seems to be a common theme here. I bet there are people that twitch worse than me and never see a doctor and never say anything about it because it just doesnt bother them but with me I am so focued on my body and always have been the twitching drives me nuts.

 

[Gracer]

As an GAD sufferer from 6 yo, I did some personal research on that very question, and I can tell you that at least in my case the reason of developing GAD and that worrying of the worst pattern was twofold.First of all, underlaying reason for developing GAD (not talking about somatic predispositions, clear in my case by stats due to Ellers syndrome) was a strong stress which I can not consume at that time. That stress give me a feeling of danger (no mater how real - for 6 yo girl it WAS real enough) and therefore I had to build a defence. That was circumstance no 1. Circumstance no. 2 was that he nature of my fears was extremely recurrent. In fact each day I meet that fear and related uncertainity. Uncertainity=danger for GAD people. Danger=need to be protected. Because uncertainity was intolerable, I discovered the easiest way to be CERTAIN - to put bad probability ahead of any other ones, because in that conditions I had awful but solid answer. At 6yo it was like: would my mom come and take me home from kindergarten - NO BECAUSE SHE NEVER WOULD COME BACK. At 41 it was like: am I really seriously ill with all that twitches - YES YOU ARE DOOMED BECAUSE OF ALS or why my daughter does not call me? OH BECAUSE SOMETHING BAD HAD HAPPENED TO HER!bad answer always makes you sure. My daugter can have her phone dicharged, or sleeping after good Friday night, etc. etc. etc. - but no, there are too many situations to consider, while in case of bad issue there is only one, very clear result, no uncecrtainity.That is how it works in my case.And I think it is more or less same pattern in many of GAD people (not sure about OCD, they are a bit different, but the very nature of compulsive actions they attempt also suggest that they can not tolerate uncertainity regarding bacterial contmination, door closed of gas turned off, or even have to protect themselves from really ancient fears like fear of doors or borders, anyway - FROM SUDDEN DEATH). First some essential stress creating feeling of life endangered, then attempt to protect against uncertainity by managing probabilities backward.Distraction helps of course. But I may warn you that it works only sometimes, partially, and that distracted fears are collecting and just would wait for some stressor to ride out and eat you. We can manage that reliably only by cognition, action and medication in case of strong bout (we should not let ourselves come to a point when we say come and eat me, it would be better than suffer so much), and no one of those three ingredients works reliably if taken separately ))

 

[jerryTwo]

WHy do we fear the worst? Because it is hard for a doctor to say it is nothing serious and in the same breath admits he/she doesn't even know what it is. So how can we believe it will not turn serious if he doesn't know what it is