10 Month Battle with Unanswered Worries

BartOne

Well-known member
Hi all,Just want to tell and and you something.I'm now twitching for 10 months and 2 days :mad: and got a weird cheek thing going on for 3.5 monhts. I'n my first 1.5 month of twitching I got 4 clean EMG's (in legs and arms). last Feb and June a clinical follow up (on my demand)But still...why do I still worry about ALS? How bad is your worrying? When I wake up at night the first thing I think about is ALSWhen I get out of bed the first thing I do is look if I can still walk normallyI do this litlle walking on toe and heels test all day long, I take every stair, every morning I take my dumbells to see if I can lift the same weight.Now I'm really into the bulbar onset. My left cheek has been weird for 3.5 months now. Sometimes paralized, numb feelings, often sore jaws. (I had a teeth with a filling pulled out in Feb - 6months ago- at that side - but could that have anything to do with it?) I also notice that my left cheeck is much tinner than the right one - atrophy? I keep worrying and thinking about dying all the time. Could this be bulbar, because I read that it always begins with swallowing and speaking issues but also with cheek - jaw weakness. Maybe this is my case? Sorry guys to bother you again with all those questions (that I may have asked before) But I really would appreciate some answers here, if you think something is wrong please tell me. ThanksBart
 
Bart- It is really amazing that you can look at yourself critically and see for yourself how obsessive you are as if you were judging another person. Read your own post and pretend it isn't you - what would you say to that person? But even then, you don't appreciate your own observations! Not one person here has thought there was anything wrong with you (outside of bfs, stress, and the same obsessive compunctions that you yourself are noticing). Many of us have had the jaw thing - tightness, soreness, ringing in the ears, numbness from all the pressure on the nerves. I've had these - it's tension - the muscles get stressed, tired. You're probably grinding your teeth in your sleep too. Most likely all this jaw action is more on one side than the other so perhaps that side is over-developing , making the other look a bit thinner. You're obsessing. OK - yeah, you could get nerve damage from dentistry and sure these things happen and some people have to get root canals but this is something you need to ask your dentist.If you had had any progressive disease, by now you wouldn't be able to do all the testing that you're doing. And I think your docs would have noticed. The bad neurological diseases are not - "maybe I have this" after 10 months - these unfortunate people have trouble doing normal motor activities which obviously you are not. Go donate some time to a handicapped program (I've done this) - you will see how lucky you are and it would be striking the capacity you have in your body that others with neurological damage and progressive diseases do not. Maybe this is why I've never worried about having these diseases...You're not a newbie anymore, it's time for you to get beyond this and stop making yourself crazy.
 
i dont know if this will make you feel better or worse, but when i wake up in the night, i think about having the dreaded disease. when i wake up in the am, i think about it too-- i think about it all the time-- sure, i have times during the day when i dont think about it, but i can not go for more than an hour...it is all consuming to me too-- that is why i come here-- in part for the all consuming aspect and in part to find out if i am experiencing similar things to others-- or for reassurance-- i hope it helps youi to know that my mind is in the same place-- which i think we should both hope to exit....take care.
 
Bart,I have believe on of the most aggrivating symptom of BFS is the fear you have ALS. And unfortunately how long this lasts depends on the severity of the symptoms. I posted the other day that there is varying degree's of severity of symptoms, it is hard to tell from posts, but you can sense it, I noted you has someone that is getting hammered by this thing. At 1 year into my symptoms I was at the point where I was absolutely convinced I had ALS. 2 years 8 months later, I am at the stage of "is it possible", even after 4 EMGS. Even though 99% of what have read does not give me any chance of developing ALS other than odds of the normal population, it is th 1% I read that I hang on to, it is unbelievable. Why, because the symptoms are kicking my ass. I dont have it, I know that 99% of the time, you do not either, the neuro's would have spotted it. We just have to get our minds to believe it, and I know it is hard for you because the symptoms are so bad. Good luck Bart, BFS can really do what it is doing to you, it is doing it to me as well.
 
Hey Bart.....Can I ask you a serious question? Please do not take it as me being mean, but have you ever seen anyone suffer from ***? Have you ever seen a loved one die of ***? If you have then you will realise just how wrong you are in your self diagnosis.I have and I guess this makes me a candidate for the kind of self doubt you have. You should trust in those people that know best when they say you do not have ***. The very thought that you may have this can cause you months of needless self testing and torture.Unless you have real weakness \ atrophy, then do not assume or even think you have this terrible disease. Once I have mastered this myself then I will be out of here, but then again I watched my dad die from it. Trust me when I say that your symptoms do NOT even sound remotely like ***.......Stay Well....Sorry if this sounds harsh.....
 
I am 52 years old and I now have 13 years of twitching and I have his whole body thing going. It really sucks and its been real hard lately.
 
Yeah, sometimes it's hard. It may sound stupid but I find the best remedy for the depression etc. is to go out and help someone or do a kindness for another. There are a lot of people in this world worse off than me and reminding myself of this keeps me from focusing on my problems regardless of their severity. I have to remember this every day have found that just one kindness a day, where I go out of my way or habit, can change my attitude and focus.Matter-of-fact that is what I need to do right now. I just found out my son is deploying to Afghanistan tomorrow and funny thing - I could care less about my cfs today.
 
Thanks everyone for replying, it really means a lot that I can count on some people here although it's always the same story. Now 10 months later, 5 neurologists (2 professors in MND) I still have myself convinced that I got ***, that I will be that one, you know...to Anguslover my best friend's father died of it and I now a 21 year old guy living in the same village as me who's got it for 3.5 years now. Bart
 
Bart, I think you need to go and re-read your post above. After what that doctor told you I am convinced that you have bfs. Please re-read it and go have a glass of wine and relax.
 

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