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Kathylund

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Aug 28, 2011
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Learn about ALS
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Ct
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Middletown
Hi everyone, First I would just like to thank all of you on this forum for the time you take to try to answer so many questions to many of us who are worried. I have been reading this board for the last couple of weeks. I myself have been having symptoms for the past month or so. I have been having some problems with my speech, it only seems that I can notice. It feels like I have to try really hard to get the words out. I went to my family doctor, who knew that I was extremely anxious about this, so he sent me for a mri which was fine and a emg of only my limbs that was performed by a neurologist last week that also came out fine. Also did bloodwork which was all perfect. I really wanted to put all of this behind me, especially after the emg, but at this point my tongue is twitching and I am more anxious than ever. My plan is to call so see if I can get another emg on my Face? tongue?
Thank you all for being here, Kathy
 
If the EMG of your limbs was fine and there were no problems noted by either your family doctor or the neurologist in their clinical neurological exams, you would be well-served to stop worrying about ALS or any other serious neurological disorder until a doctor tells you to be concerned about those things. If, on the other hand, you want to make what is almost certainly a minor annoyance into something that will make you lose sleep at night and become totally obsessed over things that every normal person has, then keep trying to "educate" yourself about bulbar symptoms from the Internet.

If your doctors had noticed any symptoms that concerned them, they would have let you know and scheduled more extensive testing and followup. The fact that they haven't done so shows the appropriate level of concern, and you should follow their lead and not second-guess them.

The choice is yours.
 
Thank you for the scolding trfogey, I guess that's what I needed, my husband has been doing the same to me al day! My family doc did look at my tongue, the neuro just administered the emg. just noticed the tongue twitch thing today, but thank you for your comments and for listening!
 
Hello kathylund. I to have tongue is twitching and twitching in my hole body, but they have never bin seen on an EMG. I have hade six in the last year. Went to a ALS specialist last week and he did a neurological exams and an EMG on all four limbs,but only two muscle at each limb. He told me that I don't have ALS. I finally got it, I don't have ALS, I spend a year of wasting my every living moment thinking about it, my husband was getting crazy,spend a lot of money in doctors and EMG's. I'm not saying that it was a total waiste off time, because I found this webside that is full of amazing people that fights this disease every day, It allsow gave me the knowlege of this horrible disease, that I never knew existed until 1 year ago. And I will allways be a supportor for people with ALS and there families. Being a afraid is ok and it is a good awaiking call that we should not take life as granted but don't let it consume your mind like I did. My unexsplainded hand weakness is still there and the twithces, some people just twich even there tongue, and the more attension that you give to you specch the more you will have problems with it ,and being extremely anxious will make you specch like that,bin there to. So please belive your doctor,why would he lie to you. Good luck to you
 
hi Island, Thank you for your reply, I am so happy to hear that you got cleared, that's wonderful! You are so right about this board, it is filled with wonderful people! I really thought it was out of my head after my emg of my limbs, but then I notice this non stop tongue twitching, on top of difficulty getting some words out, and to be honest it is still scaring me horribly. I honestly don't like the fact that this is consuming me right now, and I really don't like the fact that I am not being a stronger person than to drive others nuts, or put extra pressure on others. In my mind, I am thinking that he did not do a emg of my tongue and the bulbar is stuck there. I apologize to any on this board who I offend with my fears. I can't imagine what some of you are going through.
 
In my mind, I am thinking that he did not do a emg of my tongue and the bulbar is stuck there.

As most of us on this board realize -- and you should too -- ALS doesn't get "stuck" in one location of the body. By its diagnostic standards and the nature of its physiological progression, ALS is a disease of the entire body. Although it usually manifests itself clinically in a single location, by the time those clinical symptoms can be observed and measured, ALS has been doing damage at the subclinical level for a substantial period of time and an experienced neurologist will find additional symptoms of that damage in other parts of the body, either through EMG or the clinical neurological exam.

Making statements like "it's stuck in the bulbar" or "he didn't EMG my tongue" shows that you know very little about ALS, how ALS works and progresses, and how doctors diagnose ALS. Given that appalling level of ignorance that you have about ALS -- and, yes, you are ignorant about ALS or you wouldn't be saying the same tired old things we've refuted here dozens, if not hundreds of times -- what makes you think that you see what what qualified doctors don't?

Out of the (literally) hundreds of medical conditions that could explain your symptoms, why have you decided that ALS is the best fit? Of course, the true explanation is that you are a gullible person with an unhealthy level of health anxiety who has too much time on her hands, a compulsion to read about rare diseases, and the propensity to believe that medical "information" on the Internet has to be true. Admitting that might get you on the right track to seek treatment for what really ails you.

I apologize to any on this board who I offend with my fears.

Fears aren't offensive. Sticking to irrational fears after you've been informed that what you are basing your fears upon simply isn't so is egocentric and selfish behavior. As is apologizing for such behavior and then repeating it. That's what is offensive. But we get over it.

I can't imagine what some of you are going through.

No, you can't. But you are trying mightily to imagine it, which is why you are here. Why? Nobody knows but you. And because you are the one that started this erroneous fantasy and continue to feed it, you'll be the only one who can stop it. That makes you the one that's responsible for the fear and anxiety you feel -- and the one who can stop that fear and anxiety by changing what you think and basing your future thoughts and actions on accurate information and not lurid and morbid imaginings.

There are far healthier things to spend your imagination efforts on -- writing a poem or a story, painting a picture, composing a song. You should spend more time doing things like that and less time looking at medical stuff on the Internet.

Good luck to you.
 
Kathy,
I know how you feel. Nothing anyone says to you will probably make a difference until you make up your mind that you are wasting your time thinking about ALS. ALS could happen, but ANYTHING could happen. The best reassurance you can get is a clean EMG and Drs that are not concerned that you may have ALS. That's as good as it gets. I bite my tongue alot and sometimes stumble when speaking so I understand the mental anguish. But please don't fret any longer. Not easy to do but the only thing that's going to make you feel better is time and trying your best to concentrate your thoughts on something else. Everytime ALS pops into your brain pick something and think about that instead. It sounds childish, and like it won't work but retrain your brain to go away from ALS. It's worth a shot right?! Best wishes and I hope it turns out to be nothing. :)
 
Thank you for your reply, I don't want to offend anyone on this board, honestly that is the last thing that I would ever want. I know they are going through enough of there own. Yes, I still can't reassure myself, I wish I could but I can't. I have had an emg which was clean, I do have some atrophy in my leg, this twitching in my body,tongue and legs. I have read clean emg = no als, BUT then I start reading things saying that umn, won't show up, or PLS won't show up, so how can you tell? I have been on these boards reading and you are a great bunch. Please don't take this post as offensive, I am just really scared.
 
UMN signs are found on clinical exam. You don't have them on yours. Clear EMG and normal neuro exam mean no ALS.
 
I have read clean emg = no als, BUT then I start reading things saying that umn, won't show up, or PLS won't show up, so how can you tell?

What UMN symptoms do you think you have? Better yet, what doctor has told you that you have UMN symptoms? Why worry about symptoms that you don't have not showing up on a test that came back clean for the problems you thought you had. (hint: fasciculations are a LMN symptom. not a UMN symptom).

I have been on these boards reading and you are a great bunch. Please don't take this post as offensive, I am just really scared.

Stop looking up medical things on the Internet. Your attention is too easily distracted to the irrelevant and the morbid. It's like crack for you, as it is for most people who have health anxiety. You are unable to maintain any type of rational perspective about your own symptoms, so you go chasing after exotic and unusual conditions that would set you apart from the run-of-the-mill herd, rather than accepting the simplest and most common (and most harmless) explanation of your symptoms.

If you are scared, it's because you want to be scared; otherwise, you would listen to your doctors and get on with your life instead of feeding your anxiety by reading more on the Internet and inventing new symptoms. Don't ask for our sympathy. You're doing this to yourself. It will stop when you stop it -- and not before.

The best thing your husband could do for you right now is pull the plug on your Internet connection. The online support you claim to be seeking simply isn't worth the risk of letting you feed your health anxiety with irrelevant crap.

Good luck. Even though I'm sure we'll be answering more questions and correcting more misinformation for you for some time to come.
 
Kathy,
I really do know exactly how you feel. I had and still do have twitches along with almost every other symptom you have had. Lots of twitches. I have/had a very hard time reassuring myself as well. For me personally I wanted for someone else to make me believe that I 100% did not have ALS. I spent so much time trying to find something or someone to tell me that I do not have ALS 100%. Not to sound harsh but that's never gonna happen. No one can tell you what you want to hear. The VERY best thing you can get is a good clean clinical exam and a clean EMG. There are so many things out there to read. I am totally guilty of that too. Reading and trying to find evidence to contradict your neuro is only going to make you feel worse, been there and done that. My symptoms didn't go away but I realized after much wasted time I needed to look into other things as the source. If anyone thought ALS they would tell you right away. Maybe it's something else but probably not ALS.
 
Hi everyone, just wanted to add to the thread, hopefully someone can shed some light. I have had 2 emg's in the last month (all clean) and went to see als specialist, he said he saw no signs of als. Sinse then my speech has gotten much more slurred. Just spoke to my mom on the phone and she did notice. I don't know where to go or what to do. I have read some old posts on here that bulbar (umn) could not be detected on an emg and has been misdiagnosed. Could they be missing something? This is effecting my work. Anybody have any input on this? I have seen that Wright is an expert on emg's. maybe some input? Please don't tell me that I am reading to much on the internet, as I want to gain Knowledge, and really, alot of you are experts on this. Thank you so much for all of your last inputs, I truely, truely appriciate it.
 
If you had bulbar issues from UMN issues then you probably would have had other signs on clinical examination.
Why don't you try seeing an ent specialist? They might shed some light on what's causing it. Talk to your primary care doctor. There is no point in going straight to ALS. Too many other things could cause it. The specialist has cleared you of ALS, and you have had extensive tests to prove him correct.
 
Thank you, I see that you have possible PLS diagnosis, Do you mind me asking how they diagnosed you? Was it clinical at first visit or does it take time to present itself? And yes, I was thinking about an emt. Thank you for your words of wisdom!
 
Hi Kathy-

I am no expert on ALS, I don't live with it nor do I read about it as much as most people on this forum. But I think I can still offer some advice, because I have been and at times still am living with the fear of ALS.
Every time a doctor visited me and told me he/she saw no sign of ALS, I would wonder why they couldn't tell me for sure that I will never have it. But if you think about it, a doctor cannot tell you if you will get -any- type of disease in the future, they can only assess if you have it at the time they visit you.

About your bulbar symptoms, which I myself have, it is hard to believe but psychological aspects of our fears may very well impact the quality of our speech.
Unless you decide to trust the judgement of the professionals (it's always a good idea to ask for a second opinion), there will always be something that you feel was not done correctly.
The thing that helped me the most, aside from the great trfogey, was the realization that there are many conditions that can cause ALS like symptoms, and others that are just as serious. Since I cannot fixate on a multitude of worse case scenarios, I stopped fixating all together.
So stop worrying about ALS, try to ignore your speech and trust your doctors...just for some time to see if it helps.

Feel better.
 
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