Old 05-11-2009, 09:47 PM #1 (permalink)
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Default Im worried i might have ALS

Heres the story.. Since march i noticed some minor weakness and pain in my right hand/wrist. I also noticed some mild twitches from time to time in my arms , legs , feet, sometimes tongue. I saw a neuro doc in late march about what was going on. He did an EMG with NCV only in my arms. I was told not to worry about als, and that his findings confirmed carpal tunnel syndrome. Honestly i was having all symptoms of carpal. He told me that the twitches i was getting was due to BFS (benign fasics syndrome). He also told me that stress and anxiety can and will bring on twitching of muscles groups. Since that time , every now and then i noticed that my speech is alittle off. For some reason i feel as if when im saying things that involve the letter S or G, it sounds slurred. I also noticed that i have had alittle more saliva than usual. I dont know if it has/had anything to do with the removal of my lower left wisdom tooth. The speech thing happened somewhat b4 that, but alittle more after it was taken out. So, i went back to see the same neuro doc and told him what was going on. He suggested that i go see a psych doc because he feels my anxiety is getting out of control.He did a quick exam, and said that since i wont believe his diagnosis, he'd send me for and mri of my brain to prove i have one up there. He said he was 99.9% sure its anxiety related. If this is the case, how do you explain my speech thing? Also, why does it feel like when i drink something, i sometimes feel it in the back of my nose? Im just worried thats all. If anyones wondering im 29yrs old.I told my primary care doc about all of this, and he feels the same way as the neuro doc. So he wont send me out to see another neuro doc. I dont know what else to do. Truth is everyone, im worried that i might have Bulbar Als. And since like i stated earlier, my pcp doesnt think anything of it so he wont give me a referral to see a different neuro doc. Its gotten to the point that im listening/trying to catch myself with my speech. My insurance provider in nyc is hip, so if i need to see a specialist it has to come from my pcp.
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Old 05-12-2009, 12:10 AM #2 (permalink)
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ask your doctor to prescribe you something for anxiety and see if you feel this way in 2 weeks.

.. or go into the emergency room
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Old 05-12-2009, 12:27 AM #3 (permalink)
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ask your doctor to prescribe you something for anxiety and see if you feel this way in 2 weeks.

.. or go into the emergency room
Yup...If the neuro said not to worry about it being als. I would not worry. They will get you fixed up.
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Old 05-12-2009, 09:28 AM #4 (permalink)
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Anxiety causes speech problems, please believe that. It's actually amazing how many things anxiety can cause. Have you ever seen how stress can cause a stutter in someone (and not just temporarily either.) Feelings of unease in the brain definitely mess with speech patterns. If the doctors have given you the clear, do your best to listen to them and recognize your speech problems as anxiety. It can cause perceived and real health problems.
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Old 05-12-2009, 09:57 AM #5 (permalink)
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I was unaware of that effect of anxiety. It doesnt happen all the time. See , i had one of my relatives ask me why does it sound like whenever i say anything with an S in it , it sounds like a snake going ssss. Sometimes also, i feel like my right side of my tongue is bigger than the left. I thought maybe my gums shrunk on my left due to the wisdom tooth extraction. And, I get the whole feeling of something stuck in my throat, which i was told thats due to LPReflux. But whats got me bugged out is the fact that i feel like i have alittle bit more saliva in my mouth as usual and the fact that whenever i drink anything, i sometimes feel like its comin out my nose but its not. Also i noticed that my tongue has become alittle less sensitive to heat. I know, i sound crazy. and apparently my pcp and neuro think the same way. I have been worried since march about this and i feel paralyzed over it. Everytime i try to feel happy about anything, i get this what if feeling. And the way my insurance works, i cant just simply up and leave for a 2nd 3rd or 4th opinion.
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Old 05-12-2009, 09:59 AM #6 (permalink)
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Anxiety causes speech problems, please believe that. It's actually amazing how many things anxiety can cause. Have you ever seen how stress can cause a stutter in someone (and not just temporarily either.) Feelings of unease in the brain definitely mess with speech patterns. If the doctors have given you the clear, do your best to listen to them and recognize your speech problems as anxiety. It can cause perceived and real health problems.
I was unaware of that effect of anxiety. It doesnt happen all the time. See , i had one of my relatives ask me why does it sound like whenever i say anything with an S in it , it sounds like a snake going ssss. Sometimes also, i feel like my right side of my tongue is bigger than the left. I thought maybe my gums shrunk on my left due to the wisdom tooth extraction. And, I get the whole feeling of something stuck in my throat, which i was told thats due to LPReflux. But whats got me bugged out is the fact that i feel like i have alittle bit more saliva in my mouth as usual and the fact that whenever i drink anything, i sometimes feel like its comin out my nose but its not. Also i noticed that my tongue has become alittle less sensitive to heat. I know, i sound crazy. and apparently my pcp and neuro think the same way. I have been worried since march about this and i feel paralyzed over it. Everytime i try to feel happy about anything, i get this what if feeling. And the way my insurance works, i cant just simply up and leave for a 2nd 3rd or 4th opinion.
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Old 05-12-2009, 12:23 PM #7 (permalink)
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Joe--

The "something stuck in my throat" feeling can be a spasm in your esophagous...which are caused by reflux, which is caused by anxiety. I know this is true because it happened to me a few years ago. Do not let this stuff weigh you down.

Honestly man, your best bet is to wait it out and try not to worry. A good report from the docs + time - dramatic worsening of symptoms = in the clear.
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Old 05-12-2009, 01:21 PM #8 (permalink)
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Joe--

The "something stuck in my throat" feeling can be a spasm in your esophagous...which are caused by reflux, which is caused by anxiety. I know this is true because it happened to me a few years ago. Do not let this stuff weigh you down.

Honestly man, your best bet is to wait it out and try not to worry. A good report from the docs + time - dramatic worsening of symptoms = in the clear.
I know. I was told that by an ent that saw me last year about LPR. I just got off the phone with my pcp. I told him again about the excess saliva issue and the fact that i have somewhat of an issue with the heat sensitivity issue with my tongue. He said flat out to me that im only 29 and i have all these problems. He stated that it make one think how much off all it is real or not. Makes me feel like the bot who cried wolf. I asked again if he'd give a referral to see an ent or neuro, he said no. I was told by someone earlier that when she had a wisdom tooth pulled a month ago she experienced similar symptoms. She was told that it normally takes a few weeks for everything to return to normal. From what she described to me, its spitten image of what im goin through. The thing is when i got the tooth pulled , it was infected. The dentist shot me up like 8 times with novacaine. I could only hope that its from that and not bulbar als. Nobody feels i have it, not pcp, not neuro. Look , i know im not different than anyone who is on these boards, and i know that nobody ever wants or wanted to have it. Its just i cant get the thought out of my head. Cause some of the things i experience, kinda sorta mimics it. And in pooping a huge brick right now.
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Old 05-12-2009, 02:09 PM #9 (permalink)
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Joeman79, I have bulbar ALS, diagnosed January 2008, and what you're describing is not what I have experienced at all. My tongue is not insensitive to heat, excessive saliva is not actually excessive saliva at all, it is the inability to swallow and close your lips, there is no numbness, you just can't move but you can feel. When I try to drink it does not come out my nose (or even feel like it) it comes right back out my mouth because I can't swallow it. In short, what you are describing are not symptoms of bulbar ALS. I almost hate telling you this because it spells it out for everyone out there who is surfing rather than believing what their doctors tell them.
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Old 05-13-2009, 01:41 PM #10 (permalink)
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I wanna thank you and everyone for their input on this. I just feel like veryday most of the time my speech is good , then its not. Sometimes i feel like i stated earlier that i feel as if one side of my tongue is a little bigger than the other. Or i get the feeling like it somehow sits higher. Like i said , i told all of this to the two if them, and they look at me like im nuts. Alot of this didnt hit fully until i had the tooth pulled. Before that i was fine. As far as i know, i eat normally, and drink normally (with the occasional feeling of it hitting nose). I can move my tongue in all kinds of directions, and honestly it doesnt feel weak. I look at my tongue everyday. All i ever notice is impressions of my teeth on the sides and front of my tongue. I asked my dentist and he said its normal, sone people have wider tongues than others. I just dont see how all of this can be related to anxiety. I have never felt like this before. Its just that i noticed a progression within the last few weeks. Dont get me wrong, i thought i was having the speech issue in march. But then it stopped when i found out that the thing with my arms was just carpal. Then i didnt think of anything until i read an article about bulbar, then well, here i am.
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Old 05-13-2009, 03:11 PM #11 (permalink)
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joeman ... you say you don't see how these "symptoms" can be caused by anxiety ... which is a widespread, very common, distressing but benign condition ... so you think they must be caused by bulbar-onset ALS, the rarest form of a very rare and incurable disease.

The only connection between your symptoms and bulbar ALS seems to be that you read an article about ALS and you haven't read any articles about anxiety. As Barry said, NONE of your symptoms are "mimicing" ALS. Not even close.

You don't believe your doctors, and now you don't believe the members of this forum. I'm sure the tooth extraction has made you much more aware of the insides of your mouth, but it's kinda nuts to fixate on it like you are doing. If you continue to obsess about this, you might want to spend a few sessions with a counselor and find out what is really driving your worries.

Good luck! Hopefully when your mouth heals from the extraction, you will forget about it.
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Old 05-13-2009, 03:23 PM #12 (permalink)
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Perhaps ask for a referral to an ENT specialist. What you describe about drinking and having it feel like its going up your nose would be soft palate related, a physical cause which is easily detected with a couple of different tests that can either be ordered by your ENT and performed with a speech language pathologist, or done by the ENT during your office visit. An ENT would be of more help than a neurologist in documenting what is happening, even if not finding the cause. If there is no physical cause found for this, maybe it will help you accept that the underlying reason could be anxiety. Checking out your soft palate's function is much more of an exact science than a subjective take on how you sound when you talk. If the ENT feels there is anything off, keep in mind there are many more common causes than bulbar onset. good luck to you.
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Old 05-13-2009, 03:59 PM #13 (permalink)
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Perhaps ask for a referral to an ENT specialist. What you describe about drinking and having it feel like its going up your nose would be soft palate related, a physical cause which is easily detected with a couple of different tests that can either be ordered by your ENT and performed with a speech language pathologist, or done by the ENT during your office visit. An ENT would be of more help than a neurologist in documenting what is happening, even if not finding the cause. If there is no physical cause found for this, maybe it will help you accept that the underlying reason could be anxiety. Checking out your soft palate's function is much more of an exact science than a subjective take on how you sound when you talk. If the ENT feels there is anything off, keep in mind there are many more common causes than bulbar onset. good luck to you.
Thats exactly what i wanted my pcp to do , send me to an ENT. He flat out said no, theres no need to, its all in your mind. And i just cant up and go see one myself, cause all specialists require a referral from the patients pcp. And like i stated previously, i have HIP Medicade in nyc and its their regulations. So in order for me to see anyone, i'd have to drop my current pcp, look for another one, then the cycle starts all over again. Look im sorry i've stressed any of you out here. Im driving myself and family nuts. They(family) keep telling me to drop it. Im trying to, but its hardf for me. Again everyone , i apologize. I know it must take alot of effort for all of you to be here to do this.
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Old 05-13-2009, 05:32 PM #14 (permalink)
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Joe,

Well, obviously we don't have any way of actually knowing you online, especially in such a short time. Bottom line is if you have a problem, and its not going away on its own, then you need to get to find out what it is.

If you are not convinced your doctor is right, then you have to go through the red tape. Change your Primary Care doc, etc. It is not easy, many people on this forum have gone to more doctors than they can count, but if you should do it, then it needs to be done.

I absolutely detest it when people are afraid something is wrong, but they take no action and let their fears get the best of them. There are those who have shown up on this message board, and mentally already have themselves with one foot in the grave, but yet have not even gone to ANY doctor! So, if whatever it is bothers you enough to where it interferes in experiencing happiness, regardless of its cause, then its time to put as much perseverance as it takes into getting to a doctor or specialist who will listen to you.

I'm hesitant to say what kind of gut feeling I get, not that it really matters, as I have no medical background. and, its not like I have any sort of "dire" impression anyway.... I do know that there have been people pass through here who have missed getting a diagnosis and treatment as early as they could have, because either their doctor did not want to listen, or they did not want to listen to their doctor. Health insurance woes also have figured into the delay. From what I can remember, none of these people ended up being diagnosed with a form of ALS, but some of them had conditions of varying degrees of seriousness that could respond to treatment, and could have been treated sooner if only ... (see above)

Here are the things I would ask the PCP for before ditching him and trying to find a new one:

Ask one more time for a referral to an ENT, you could site your acid reflux as a cause...

Ask for a referral to a speech and language pathologist (for the purpose of having a modified barium swallow study done). Usually it would be a specialist that would handle this referral, but it would not hurt to ask your primary care doc for it. You should NOT ask for the test specifically, because "Joe Average Person" does not know it exists and your doctor will only continue to be convinced its in your head if you start saying things like modified barium swallow.... I would just say your Aunt Mary's friend (or whatever) went to New York Eye and Ear Infirmary in NYC, that this person saw a Speech Pathologist, and you are certain something is off, and you want a referral to there, that institution. It is a distance from Queens (which I think is the area you live in) but it is not hard to get there. You can trust that the SLP or ENT will know what tests should be run, (and if they should be run), once you have your appointment. ~ and it is speech pathologist you should ask to see, not speech therapist.

You will have to wait a while for the appointment if you get it, and if your problems subside, then you can chalk it up to the tooth extraction, anxiety, whatever, and be happy to continue on with your life (and don't keep looking over your shoulder for more related problems!)

Worst case, you fail in the attempt to get a referral to either a SLP or ENT and you have to go on the hunt for a new referring doctor, this too will take time, and if your symptoms subside, then its all good too.

The big thing is, when you get get to the next level of specialty, be willing to believe that this person has the experience and knowledge to know if there is something that needs looked into or not.

PS, its best not to use the quote function when you respond, it is a lot of work for some members who don't have good hand function to scroll down through, just to get to the next thing written.

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Old 05-13-2009, 05:57 PM #15 (permalink)
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I thank you for your response to my issue. I will take heed to what you have written. The only thing i want to ask you is this -

When you said this, "I'm hesitant to say what kind of gut feeling I get, not that it really matters, as I have no medical background. and, its not like I have any sort of "dire" impression anyway.... I do know that there have been people pass through here who have missed getting a diagnosis and treatment as early as they could have, because either their doctor did not want to listen, or they did not want to listen to their doctor. Health insurance woes also have figured into the delay. From what I can remember, none of these people ended up being diagnosed with a form of ALS, but some of them had conditions of varying degrees of seriousness that could respond to treatment, and could have been treated sooner if only ... (see above)", What did you mean by that? Do you think that i have bulbar? What gut feeling do you have? Im going to speak to my pcp tomorrow, and see what he says.
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