Convincing Self of Bulbar Onset

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exploringexistence

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Right now I am convinced that I have bulbar onset ***. I already posted a topic about my awareness of my tongue hitting my teeth. I was momentarily reassured, until today when I seem to be sounding like I have a lisp and I am tripping and stuttering over words like crazy. Also this stupid throat spasm thing I got before is back. It used to just happen during sleep but now it's happening while awake. It's like my throat jumps or something. How rare is it for someone 25 to get this kind of onset? My arms are twitching like crazy right now too. I took an anxiety pill to calm down but it's not working. Then I go to weigh myself on the scale and I lost another couple pounds. I have been losing weight lately but I wasn't worried since I was hardly eating before but I was really making an extra effort to make myself eat normally again. I feel like my life is over.
 
Have you been examined by a qualified neuro?? If so, what did he/she say? Were your tests normal? If so, you can forget about als. BFS is a condition that causes extreme anxiety for some of us, including me. The most important step in dealing with this condition is getting the anxiety under control.....once you do that, this condition becomes a completely tolerable pain in the twitch!Hang in there, things will get better.Take care,Gary
 
Your life is not over. Your age is clearly in your favor. Do other people notice that you are speaking differently? I used to think I had voice problems but no one noticed anything different. Then I read an account of Tom Watson's caddy who did have als - people were unable to understand him and they thought he was drunk because his speech was so slurred. Have you seen a doc?
 
Many on this site have had this problem since the tongue is just another muscle. Well, it has been normal for me to feel the sensations you describe since my tongue is my worst part for BCFS sxs. It comes it goes it leaves it visits. This willpass but it willbe back if you have BCFS. Then you will just learn to live with it. Maybe with medicinal help like me!
 
Calm down. How rare is it for someone 25 to get bulbar onset? INCREDIBLY. It's first of all incredibly rare for someone 25 to get ALS at all, and bulbar onset is even more rare. You do not have ALS. You have tremendous, uncontrolled anxiety and that is what is causing your problems with your tongue. Look back at your older posts - the anxiety you're exhibiting is off the charts and that takes a toll on your body. I've both read and posted many anxiety-ridden posts on this site and I can truthfully say that yours are probably the worst as far as the anxiety you're exhibiting. Believe me, if you had bulbar ALS, your doctor would know it and anyone speaking to you would know it. What "anxiety pill" did you take to calm down and in what dose? From what I understand from my GP, anxiety is like pain - once it's started it can be difficult for medication to catch up with it.I've said this before - you need to get your anxiety under control, and once you do that your symptoms will get less worrisome. I'm not saying they will go away b/c if you have BFS those benign twitches will still be around.
 
Thanks again for the responses. I'm so sorry to go off like this on this site practically on a daily basis.Gary, I have never been to a neuro at all. I went to my GP twice about this and was examined by her as well as her colleague that has been practicing medicine even longer than she has. Both did strength tests and reflex tests and said my reflexes were fine as was my strength. Both assured me I do not have ***. The first week after my appointment, I thought I was doing fairly well in coping but then panic quickly set in again.MarksmanS, I saw my doctor two weeks ago. My speech wasn't so much a concern back then. I did tell her my throat jumping issues and she figured it was anxiety related. I thought she was probably right, because when I took a pill a few hours before bed, I was no longer woken up in the night with these things. No one says they notice anything different about the way I talk but I still feel like there is a lisp starting or something and it is making me so scared. I remember reading before that people with *** typically have problems with the letter "S" so I just don't know. I called my doc and she's supposed to call me back later today.Zeke, my tongue does twitch and it was twitching quite a bit last night too. It's not really my worst spot though. Before my worst spot was my right leg but now both my arms have been off the wall lately with the twitching and jerking. The thing that's concerning me now too is my middle finger is twitching back and forth. Sometimes I can feel it and sometimes I can't so I don't know if this is a really bad sign or what.Joanne, I totally agree with you about my anxiety level. I thought I had it under control before but obviously I didn't. I am taking Klonopin 0.5 mg. I just took one about an hour and a half ago and still I am so scared. When my doctor calls, I'm going to see what her advice is. I just wish she'd schedule me for an EMG so I could be done with it.
 
I tried Klonopin once in the midst of an anxiety attack and it didn't really calm me down so much as make me tired. I fell asleep so of course I wasn't anxious - I was sleeping! Trust me when I say this b/c you need to believe it - IF YOUR DOCTOR TOLD YOU THAT YOU'RE OK, THEN YOU'RE OK. Yes, you haven't been to a neuro, but if you look at the posts of those who have, you will see that any physician (and probably almost any layperson) could spot the weakness associated with ALS quite easily. People have posted information from neuros such as "ALS is not a subtle disease." Mariaj's mother has ALS and she has said it was quite obvious even before they had the diagnosis that something was terribly wrong with her mom. She didn't have any doctor's telling her that she was fine - she was clearly sick to all who saw her and she was quickly diagnosed.You are 25 years old. ALS is incredibly rare in and of itself but it's almost unheard of in the young. Most importantly, you've had two professional medical opinions saying that you are not suffering from ALS. You need to get ahold of your anxiety and realize that you do not know better than your doctors. You need to stop looking up information about ALS and trying to fit your symptoms into someone else's experience. If you are still looking up information on the internet you need to STOP IMMEDIATELY.Talk to your doctor about your anxiety and the fact that you can't seem to let this go. It's terrible that you are doing this to yourself and potentially ruining what are the best years of your life worrying about something that you do not have.Joanne
 
Joanne, I know you are so right. I have really let my anxiety get ahold of me and right now it's tough to break free. I talked to my doctor yesterday and told her I am still so scared. She once again reassured me I'm fine but told me that she'd set me up with a neuro for my own peace of mind so hopefully I can move on with my life. She's calling back later with the appointment.Nettie
 
Nettie, I located your post and a new keyboard with keys not missing. I am @ local library. Supposed to be studying for finals. I almost tip toe'd to the neurology section for some books then I decided no way I cannot decipher these things in these books. Plus why bring on the rain? Im starting to see sunshine. I know deep down I am ok. As you do. I guess it is just I feel like my symptoms are different than every one elses and that is not the case. I've read numerous cases on here and I am not the worse. I have it quite easy besides the anxiety that is almost killing me. Good luck with your neuro appt. Please keep posted. I know you are fine and I know I am fine. I have been digging in archives here and seen alot of old timers so to speak that have seen neuros and they have alot of knowledge. I cant keep reading the same thing over and over again and keep doubting what they are all saying, thats just stupid. I do it though.Abs
 
Nettie:I truly hope that seeing the neuro will reassure you, but with your level of anxiety and the reassurance you've gotten that you can't seem to accept, I worry that it won't. You've had two very definite medical opinions that have ruled out ALS but you feel you need the "expert" neuro opinion. What will be next? Will you think the neuro you see is not qualified enough b/c he/she is not a "specialist" in ALS? Will you insist on an EMG even if he/she tells you that you don't need one? Will you refute the results of the EMG b/c you think it: (1) was done on the wrong limb (2) was done too soon (3) wasn't done by a qualified person (4) wasn't read correctly? etc etc etc. Ask yourself before you see the neuro - when will it be enough? Until you get your anxiety under some sort of control, I truly worry that no medical opinion/test/reassurance will be good enough for you. What you've had already is so much better than what many people get and it's apparently not enough. Your neurological health is not what you need to focus on right now - it's your mental health, and until you do, this won't get better for you. I'm not throwing stones at you. I completely understand how you are feeling and know this is very real for you, I've been there. Being an objective outsider howerver please trust me, it's not ALS.Keep the appt with the neuro but promise yourself in advance that you will accept his/her word at face value and not demand tests/additional evaluations if he/she says you don't need them. In the meantime, please talk to your doctor about your anxiety and get a referral that can really help you - to a counselor or therapist. Joanne
 
You can't have ALS and have this type of sporadic sxs. ALS starts in one location and rolls over every muscle in its non-stop path. There is no jumping of sxs from body part to body part. Just the persistent degradation. This is not you! Joannela is right on the money! I could not agree with that view because it applies to me too!
 
Thanks guys. I must admit though that I do want the EMG because I feel like it's the only way I'll have true peace of mind. :oops: Then I do plan to see a therapist and get on some medication. I know I am a mess and I apologize :(
 
There's no need to apologize to us. The only one you're hurting is yourself. Do yourself a favor - if the neuro says you don't need an EMG, don't insist. I've read posts of many people here who have had negative EMGs and still thought they had ALS b/c they could not accept the fact that the BFS symptoms are just that - BFS. There have been lots of people before you who didn't believe their neuros, didn't believe the EMGs, and I can totally see you being one of them b/c your anxiety is so high. Please realize now that you may be headed in that direction and make a serious effort not to go there.
 

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