My Speech Problem: A 20-Month Struggle

puggleful

Member
I posted a few months ago and I have talked to a few people on here but I am a mess. Here's why:20 months ago (yes, I am counting like a nut, lol) I had this weird feeling that I was having to work harder than usual to pronounce words, especially words with an "s" sound. I am a nursing student, came across the word "dysarthria", googled it, and it has been a rough, downhill slope from there. My grandma died of ALS (in her 70's, but still) and every site pointed to "bulbar ALS". Especially the sites where people who actually do have ALS share their stories. They scare the bajeeses out of me. Anyways, here I am 20 months later with a twitching tongue and STILL can't talk. I can't tell if it's progressive or if I just have good and bad days and nothing is really changing. I am having a hard time dealing with it (REALLY hard). I literally look at my tongue numerous times each day and every time I look, my tongue looks like it's getting skinnier. I have tongue twitching almost every night now, or a weird sensation that I can only describe as twitching. When I stick my tongue out and flex it, it pulls to the left. However, my major issue is that I cannot speak without the sensation of difficulty. I cannot say "s" words. I must mention that I have always had a slight lisp, but it seems exaggerated. And when I say I cannot speak, I mean....this sensation is here and has been here every day, every time I speak for the past 20 months. Sometimes it's more pronounced and sometimes it feels clearer but I never ever get a break from it. I don't know what to do anymore. I have been to a few neuros (4 to be exact), had ck levels (twice), aldolase levels, sed rate levels (not sure why) and these were all normal. About 6 months ago, I had an EMG of my right arm and right leg and that came out clean (and have asked 2 neuros to do one of the tongue but they refuse) . I have been to 2 ENT's and had a (normal) swallow eval. The neuros I have seen are convinced nothing is wrong with me but I feel there is. It's so frustrating for this feeling the be present EVERY time I talk. I want to relax and not think about it but talking is something I do all day every day and every time I talk, I feel my tongue is weak and the panic cycle begins again.I have tried Zoloft, am on Xanax (which improves the panic but not the speech...and also makes me very tired), tried therapy, yoga, vigorous exercise, swimming, reading...everything. I am a complete mess. Does ANYONE have any advice? I'm afraid I am on a slow path to death. I have read that bulbar als is quite aggresive but stupid google tells of stories of people who have had bulbar als for a long time. I am afraid I am just really slowly progressing. I can't enjoy life like this. HELP :(
 
I may be going back over roads that you've already traveled, but I really want to help. 1. Did you have an EEG? There was a poster on here named Amy that talked about problems getting her words out. A little different from what you describe, but her EEG did show a minor seizure disorder. She went by the name priorityhigh--look at her very first post.2. Did you have any recent surgeries? I had a friend who got her tonsils out several years ago. Since that time, she's had problems with her tongue (esp. in regards to taste). They think some nerves were damaged with a clamp that was used. 3. Did any of the neuros do an MRI and/or an MRA?4. Were you doing anything differently before all of this started?Hopefully, some other posters will have some ideas if mine aren't helpful.
 
As much as I would love for my troubles to be seizure related rather than ALS related, and although I have never had and EEG, I really doubt that I have a seizure disorder. It's a good suggestion and I really appreciate it but it's not that I can't think of words to get out, it's more muscular. As far as surgery, I did have a tooth removed shortly before these issues started. I had a filling fall out that I never had fixed and it ended up needing a root canal, which I was too chicken to do (it hurts!) so I ended up having to have it pulled. I have considered that the speech issues could be related to the missing tooth but when I asked the Dr, he said probably not :(.I have not had an MRI yet, but I saw a neuro a few weeks ago who game me an order for an MRI and I am planning on doing in in the next few days, pretty nervous though and don't have a lot of time as I have to young kids and no babysitter!The only thing I can think of that was different is that.....and this is gong to really make me sound like a mental case.....I had bulimia. I was struggling with it for a long time (5 years) and around the time the issues started, I was working on completely getting over the eating disorder. In my few moments in which I am not in the midst of a constant panic attack, my sane mind says "maybe I am replacing my eating disorder with another obsession" but it's hard to convince myself of this why my words come out all lispy like.Thanks for your input!!! I can use all the help I can get!!!
 
Please stop reading ALS stories or googling things. You could take horse tranquilizers and still go nuts from anxiety so long as you're doing either of those things.You've had this problem for 20 months? You know bulbar onset is typically the most aggressive (and rare) form? If you had that you'd be toast by now.You know what's really, really common? TMJD. For about 2 years now it's made me feel like I have a tired jaw and have difficulty making th and s sounds. Here is the funny thing though - if I obsess on it, it gets far worse. If I put it out of my head (difficult to do), I often forget about it completely because my symptoms get substantially better.But please, realize there is nothing to be gained by reading about ALS. Of 100 people that worry themselves sick that they have it, statistically none of them had it and worried themselves sick for no reason.
 
I tried not to respond to this thread, but I just cant sit back and let you convince your self that you have Bulbar ALS. Puggles, I have spoke with you on the phone (been a few months ago but still) you spoke very clearly and I heard no lisp, no slurr in your speech, NONE :D) There are 2 things which can very easily cause what you are experiencing and that is ANXIETY and TMJ. And you cant tell me you dont have both. Anyone who has anxiety on a level like you, me and several others do, has to have some level of TMJ, it just comes with the territory. TMJ causes many people to slurr, I'm one of them, and anxiety can cause many to slurr or think they are, and guess what the most popular letter is, yep, S's, I swear, we all sound hissy and lispy when we have that crap. Or we think we do any way because we can feel it when it happens.Also, I cant understand why your doctor would have told you that the fact that you had a tooth pulled would have nothing to do with it, that is bull. If you have a tooth pulled, especially a back tooth, it changes your bite, ask any dentist out there. Which in turn would aggravate TMJ or even cause it in some cases. How do I know, it happened to me, and I ask way to many questions, and I have or feel like I have slurring issues. To be honest, slurred speech is a common topic with others on here I have spoke to and others on certain anxiety sites, so you are far from a rarity with this one.Ok this is the part I shouldnt say but I'm going to, S's are the popular letter with BFSers, Anxiety sufferers, and TMJers, but with bulbar patients, G's and T's are often the problem letters. If you have seen all these docs and specialists and they all say you are fine, then trust me, you are fine, they are not going to chance a law suit with missing a deadly disease diagnosis, and take a chance on you showing up in a wheelchair a year later crying, saying "you said I was fine". They are not there to lie to you or hide a diagnosis from you. Come on now.If you are truly worried about your speech, then go see a speech pathologist. They are often the first ones to pick up an issue. They know exactly what to look for and listen for when it comes to Bulbar, as they work with many ALS patients. Its a fact.You said this has been going on for 20 months with out a break, hmm, if this was really happening, I mean really happening, everyone around you would be hearing it, not just you, in many cases ( not all) the person with bulbar cant hear what others are hearing. You dont have Bulbar puggles, stop torturing yourself please. Please dont waste anymore time on this. You are too young anyways.I am sure many will think I am a b**** for this response, but I cant help it, I have seen and heard too many like you and it just kills me to see young adults waisting there lives worrying about a disease that they dont have and may very well never get.Please take careRobynn :D)
 
So you have difficulty with your 's' sounds too? I hate it so much. I do believe I have TMJ but I have a hard time connecting TMJ with difficulty with speech and especially the stupid tongue twitches. Is it bad that I actually cracked up when you said I'd be "toast"? Could that be considered emotional lability? haha....
 
Oh my goodness, mommyLDN, I would never think you're anything but kind for any response. I know I am a mess and I absolutely don't want to be that way. I do not know why I cannot kick this fear. All my conversations begin with "I can't wait until...(I graduate, go on vacation, etc)...but I'll probably be degenerated by then". I know I deserve to be yelled at, and I know that it's not fair for me to spend my 20's worrying about ALS when there are people out there who would love to hear as many neuros as I have heard say "you do not have als". This is the only place that I have felt that I can come to find comfort, and you did help me because my "g's" and "t's" sound perfect ;).Thanks again!
 
No thanks necessary puggles, really. I hope what I said sticks a little, as I dont want you waisting your 20's on a disease you do not have. No one should waste their 20's because trust me, once they are gone they are gone, and its just a hop skip and a jump from 30 to 40, and trust me, you will be like me kicking your self in the ALS for waisting what time you can never get back, and waisting the most likely of your years that most are quite healthy and have very little to worry about health wise. Take that vacation, its ok to let this one go I promise.We are hear if you need us.Take careRobynn :D)
 
Hello, Puggles. I am about to gently lecture you. It is obvious that BFS has made you nuts, lol! Believe me I am saying that with all the love and compassion in my heart. I've been where you are emotionally and all the reasoning and logic in the world could't help me. No one can reassure you. The work is yours to do. Here are the secrets:1. NEVER GOOGLE A SYMPTOM AGAIN!! If you do, you deserve the anxiety you get. I cannot stress this one emphatically enough. Stop right this minute. Refuse to victimize yourself any longer.2. NEVER GO TO ALS WEBSITES OR FORUMS. NEVER READ PERSONAL ACCOUNTS OF SUFFERERS. See above.3. GET BACK ON DAILY MEDICATION. You say you tried Zoloft. Did you try it for a few months? It takes a while to work. If you tried it for that long and it didn't work, try another medication. I think you are right about your obsessive compulsive tendencies and meds can help that.4. Remind yourself with every negative thought that you are choosing not to believe 4 neurologists (and that does not follow logic!)I could go on, but I think you get the picture. Hope you choose believe you are well. If not for your own sake, then for the sake of your children.Take care!Becky
 
puggles my sweet girl...your stuck in anxiety mode...anxiety by itself will cause all your symptoms...i know...i have them...and for the poster who referred to amy...guess what it was all anxiety...nothing more nothing less. I know cause we are still good friends...she doesn't come here anymore cause she doesn't nred to.
 
I think after 20 months, its very reassuring. However, I would insist on EMG of bulbar region, just to be sure. It will help you a lot.
 
Twin is 100% right. As for EMG of tongue - the neurologist refused to do it. That 100% means there is no reason to do it. There is no wiggle room there at all.Think about it - the neurologist has every reason to EMG you to death. He makes big bucks when he does that procedure, gets more practice and protects himself against lawsuits since he did everything you wanted. You can be *beep* sure that if a doctor tells you he is not running a test that you've asked for that there is a 0% chance of that test being needed.
 
It's amazing what the mind can do. I honestly believe that you think something is wrong. I have been there. I could have sworn at one point my tounge had atrophy. I would stare at it at work all day. When I was driving I would constantly be looking in the mirror at it (I can't imagine what the people driving behind me thought). Doctors told me nothing was wrong. If you say you have seen 4 neurologists and they have all examined your tounge and they say you are fine, then believe them. They know what to look for. I know where you have been. Feeling hopeless convinced something is wrong but all the doctors tell you there isn't. Let me ask you.... you say you have trouble saying words. Has any of your doctors noticed anything wrong with your speech? If they have not, what do you think that means? I am just trying to reason with you. Think about it. ~leslie
 
Leslie I've been there too and your advice is spot on. By the way, ever hear the song, "I'm Yours" by Jason Mraz? Has appropriate lyrics for many of us:I've been spending way too long checking my tongue in the mirrorAnd bending over backwards just to try to see it clearerBut my breath fogged up the glassAnd so I drew a new face and I laughed
 
I know! everytime I hear that song, I wonder if he has had similar issues...it just seems like those lyrics are to spot on...he must have.....why else would you check your tongue in the mirror?? haha
 

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