Living in Fear of ALS

[TommyyMcCaughey]

I have been living in fear for the better part of 6 months. Have had 3 neros look at me all saying the same thing they do not think I have als. I have been bitting my tounge and mouth a lot. They there was no apreciable weakness. I have been to the local mental hospital to help me cope with the feelings. I am so scared of als that it consumes my every thought no matter how much I try to put on a good face I am scared of bulbar. I am scared of als in general. All 3 neros didn't think I needed an emg. Please let me know if you have had these fears and if you have had symptoms or the belief that you had bulbar symptoms. Please help.

 

[OnyxSnakesteffaniet]

Hi Tom,believe me: EMGs do not help to cope with your fear. I had 3 cleam EMGs during the first year and I am still tinking of the worst. The symptoms do not go away from EMGs.Kind regardsSteffen

 

[TommyyMcCaughey]

Thank you the main issue is my fear. I recently went back to work after 3 months off and I still have a hard time coping.

 

[JohnnyRocket]

Well, most people who found their way here have been or or still are consumed by fear. Just like everyone else, there are varying degrees of fear depending on the person. As far as bulbar is concerned, it is a common progression of our irrational thought process to at some point fear bulbar onset of ALS. Given your severity of anxiety, it would be a MIRACLE for you to not go through the "bulbar phase" as most of us have. I know it's hard to cope, but the silver lining is obvious....you/I don't have ALS regardless of what our minds tell us. Would you rather be dying of actual ALS yet able to cope through your daily life (as little as you have left), or would you rather suffer from imaginary ALS (which is what you actually have) yet have a mighty struggle with anxiety/fear? Fear and anxiety can be treated and defeated. I wish the same can be said for ALS.

 

[RockSolidGuy89]

i think you have an extreme health anxiety possibly combined with obsessive thoughts (ocd) - these two things often overlapit's hard to let go of the fear of something so powerfulbut let's look at the factsthree different neuros cleared youyou bite your tongue and mouth a lot = classic anxiety symptomsoh and obsessive thoughts and somatization (when we constantly think about or focus on a specific area) are particularly affecting when focused on the mouth/tongue area, these areas are the easiest for us to think we are developing some weird new symptoms when we are being affected by anxietywe produce a lot of saliva, out teeth chatter, we bite the cheek/tongue/mouth etc etcmaybe you should take some anti-anxiety pills to help with some of these symptoms or see a counsellor who is an expert in health anxiety or obsessive thoughts and who can teach you to think in a more rational and healthy way using cognitive behavioral therapy (cbt)I am not yet even 100% over my bulbar fear, i still get nagging little doubts and my face is twitching a lot these days but then I look back and tell myself that I have been twitching for so long all over my body then why would these facial ones suddenly be bad, I tell myself that I thought I had swallowing issues in the past and now my swallowing is fine, I thought I had speech issues in the past but I never truly slurred, just stumbled over a word here and there because I was anxious - I had moments where all I was thinking about was the position of tongue or if I was drooling or if my bite was off or if my uvula was straight or if my tongue was scalloped, just constant self-analysis and you know what it's all crap anyway, it's all google-inspired panic.................just before christmas I remember a night when I was lying in bed and I was convinced I was going to choke myself as I was constantly swallowing saliva - it truly is mind-blowing what capacity the human mind and overblown anxiety has in it to torture us and it is my firm belief that you are suffering from that and not alsin my opinion you are a victim of fear itself rather than the thing you fear and that's what you have to deal with - the good news is that in time almost all of us do learn to deal with it, sometimes there are relapses and bad days and momentary panics but for the most part in time the fear will slowly ebb away

 

[TommyyMcCaughey]

I take Klonpin and celexa but the fear comes and goes and I have been bitting my mouth a lot.

 

[Gracer]

therer is no drug yet to compensate the root cause of being anxious Science tells us that thanks to MRI one can see that anxious persons lack some action of sturctures we have in our brain between amygdala (a center of emotional impulses) and a cortex (which is our thinking and acting management center). Due to that lack of 'brakes' (which are actually neurons and neuronal paths to excite in responce of emotional signal) we have strong emotions transferred directly into cortex without previous unconscious evalation or with unsufficient evaluation. It makes us very alert and witty, cheerful, agile etc. but in turn it makes us super anxious.Drugs can suppress a bit the intensity of emotional signals or make your brain use serotonine more efficicently feeling less down but it does not alter the way in which bad thoughts emerge and come unscreened to your cortex. To do that you must apply some rational thinking in a very special way wich usually is very hard for anxious person because he or she is already suppressed by impulses and that closes rational thinking pathways. CBT developed great methods to interrupt emotional streams early on and to suppress the excitation they cause in your conscious part of mind, so it helps a lot. Speaking therpay of types other than CBT is also very helpful because our fears often support those stubborn patterns in our mind, and talking with good and trustful and skilled person about your fears helps to understand where our defence is broken or organized in a wrong way. Remember that fears in fact have an aim to protrect you )) but this is a very, hmmmm, special protection, and you have to be a manager otherwise you'd be managed by fears.that is why usually meds only do not help or help only temporary and not for long. We need to manage our brains to be successful in decreasing fears back to beneficial level of alertness.

 

[TwitchyAz]

Yuli...which CBT are you referencing? some of the local therapists who do CBT are charging a fortune

 

[Gracer]

Cognitive behaviourial therapy is what I mean. I personally did not have many success with CBT therapist itself but my speaking therapist (who belongs to another approach) managed to do it in a soft way so in fact I found I am using it with great results!by the way CBT is the only therapy as far as I know which is covered by medical insurance in certain countries...