Im worried i might have ALS

[joeman79]

I also wanted to ask for a name to a ENT over at the NY eye & ear. My insurance is gonna want a name. So i would have to look him/her up and see if the ENT takes my insurance.

 

[rose]

Joe, no no, not bulbar als, there have been those with nerve entrapment, autoimmune conditions, or autoimmune reactions to previous illness or infection, one person it turns out has a thymoma. I do not know if it was overlooked from the get go, but she definitely had difficulties getting the referrals she needed. The most extreme example I can remember is one that was cancer which was overlooked, not because the person was thought to have anxiety, but rather thought to have bulbar als. My point was that you have to trust your doctor is being thorough. I have a problem with any PCP who is unwilling to provide referrals.

You already got good advise from others here in that it is unlikely for anyone to have bulbar onset of ALS, much less someone of your age.....We don't know if you have a history of anxiety, or if you've never been anxious a day in your life,(but are/aren't now.) We can't know if you've had a reaction to the dental procedure, or even if you have several conditions, such as carpel tunnel, and bfs which is causing you anxiety and in turn exacerbating the bfs. We don't know if you've gone in to see your PCP as a pattern of false alarms or not. and even if you HAD already had previous scares, if this is something that is interfering with your life, you should have a doctor willing to assist you in getting help for it.

We get a lot of people on here who are scared because they twitch. (not used as criteria to diagnose als) We also get a lot of people on here who think they're slurring (when they're not) or who think feeling a lump in their throat is a sign of bubar palsy (its not) or drool on their pillow so they're convinced its als (it isn't) , that their tongue feels funny in their mouth (nope) etc etc...

But, we don't get that many of the anxious and scared complaining of it feeling like water is going up their noses when they drink. (although now that this is written about, some may acquire it as a new symptom) But... you said you've had the explanation of the tooth extraction having this as a possible side effect..... so, there you go, that's why you should work on getting in for another opinion.


good luck to you

 

[rose]

I only know Manhattan and New Jersey. I go to Chandra Ivey, at ENT and Allergy Associates. This practice is huge, many locations, and they probably have an office nearer to you, Dr Ivey works out of a couple of their offices, but I don't know which ones other than where I'm seen at. I think they take most insurances.

NY eye and ear is the "infirmary" one, there may be more than one Eye and Ear hospital in NYC. They have an off site location for speech and language, which includes swallowing. Testing is usually done at the hospital, and prelim evaluations, and regular appointments done in their offices.

 

[joeman79]

I am so very sorry that i misinterpreted what you have stated earlier. Yes, i do have an extreme history with anxiety. I worry constantly about anything and everything under the sun. With all the scares i've had in the past year, and with all major tests and whatnot coming back clear, is kinda what gives people the impression like im the boy who cried wolf. With the feeling of the liquid nose thing, i never once had it come out of my nose. It was a sensation of feeling like the back of my throat near the nasal cavity thingy was getting wet. When i lived in missouri, i saw an ent back in march 08. I told him of the something stuck feeling. He did his exam and performed the endoscope thing through the nose. He told me that while he saw nothing alarming, he did see that my lower throat was red, and that there was mild edema(swelling) of my vocal chords. He stated to me that i had LPR. Which i know i do, cause im also on meds for GERD. I explained all of this to my pcp. He told me yesturday that it was his medical opinion that im fine. I asked for the ENT referral, he said no he didnt feel like i needed to see anyone. He stated to me that , " Your only 29, and you mean to tell me that your having all of these problems. Makes one wonder how much of it is real or not". My anxiety has been "intensified" about my health ever since my mom died 2yrs ago from a heart attack. I worry about everything. I never knew anxiety could have an effect on a persons speech. I never knew that anxiety could make a person have any of this.

 

[rose]

Joe,

I'm sorry about your mom. I'm thinking if you're only 29, she was very young to have a heart attack.

Yes, anxiety can have a profound effect on the entire body. If you think about it, it makes sense, as the effect of mental and emotional stress on our physical being are so well documented.

I've written about this before on the forum, but its been so long you probably won't stumble across it... I developed a very weak voice, and eventually the road of testing led to an EMG of my vocal cords. While I was waiting in the hallway for my turn to go in for it, a patient came out, and the neurologist with her, and they stood within ear shot of me talking. Or, I should say the doctor was talking, and she was whispering. He was explaining to her that there was no physical cause to be found for her losing her voice, and that she needed to start going back to her psychiatrist. She nodded and that was pretty much it. I was so surprised, I had no idea that anything other than physical origin could cause loss of voice, really, how could it, right?

So... I was telling my son about it, and he said that yes, he'd heard of this, and that the creator of a comic strip ~ I think Calvin & Hobbs (?) had lost his voice for several years, and the comic creation was what he began as a way to express himself during that time.

I think you should ask for another visit with the ENT. If you're scoped, you can be asked to sip a little water, then talk, and if the doctor sees bubbles, the doctor will know the soft palate is not closing tight enough. Or, the swallow study I'd talked about will show if anything is going up into your sinus cavity. If nothing turns up, then you can have that to know for sure, and that's a good thing. ... Also, there has to be some way to get help managing your anxiety, I know many others on the forum have written about the benefit they find medications to control it, either/and some kind of counseling or an outlet for you to be free to talk to someone.

Good luck, please let us of your progress.

 

[brendapals]

Joe-

Please, please get to an emergency room and get something for anxiety!


And people wonder why I don't post much on these topics.......

And what is the worst thing in the whole wide world that could happen to anyone?


My goodness, turn off the computer, go get some fresh air and exercise-great relief for anxiety.

The sun WILL come up tomorrow, I'm just sure of it!
take care,
brenda

 

[joeman79]

I want to thank everyone for their responses to my question. I have a feeling that I may have stepped on a few toes here, and for that I apologize. What I wanted to do now is go into detail about what has been going on with me in hopes it gives everyone a better perspective. I would like to warn everyone that this is going to be rather long…
It all started back in February of this year. For some odd reason out of nowhere I started feeling pain in the knuckles of my right hand. Didn’t pay attention to it for a week or so. Then the pain progressed to my wrist and forearm. Then I noticed some slight cramping and twitching in my hand. Then also, for some reason I noticed my tongue twitch. It didn’t twitch a lot, maybe once a day. So like always, I went looking on the internet for what could possibly be going on. All I kept coming across was ALS. So I got real scared. I went to my pcp about my symptoms and fears. He told me that what was happening with me was carpal tunnel. I believed him at 1st. What made me worry more was that the twitching spread to my other arm, legs, lips, feet, eyebrows, stomach. So then I got paranoid. I went back to him and he sent me to a neurologist. He also told me not to worry about ALS. It was around that time that I noticed I had an off and on again slight slur in my speech when I said the letter S or G. So like clockwork, I looked it up. What did I see, Bulbar onset. So I got even more paranoid. I started checking to see if my tongue was shrinking, looking for dents, checking my soft palate seeing if all sides move normally when I say AH, tried giving myself the Babinski test, testing myself for footdrop, you name it. I found all the instructions on youtube, and another site called associated content. My friends were telling me that I was talking normal, and that I needed to quit trying to catch my every word. So I went back to my pcp, and he sent me to a neuro. I saw the neuro in March. He performed the EMG & NCV. He only checked my arms. He told me that it was infact carpal tunnel in both arms. But it was more dominant in my right. So I asked him about ALS. He told me that that the twitching I was getting was not from ALS but from BFS. So I left his office feeling on top of the world. All previously stated symptoms stopped. My pcp sent me to an orthopedic guy. He ordered an mri. Same thing, carpal with really bad tendonitis. I was like ok. He gave me a shot in the wrist, then I guess so be it. Then my wisdom tooth got infected. Went and got it pulled. Since then, I noticed the speech thing again. Noticed that I was having a little more saliva than usual , wondering why I feel as if one side of my tongue felt bigger than the other, started feeling like my uvula was touching the back of my tongue, started feeling like whenever I drink something thought it was coming out my nose but it’s not, etc. I started worrying again. Then Bulbar popped in my head. I remembered reading somewhere that a person could have a clean EMG and still have ALS. Doesn’t have to start in the limbs, could start in the mouth and the EMG wouldn’t pick it up. So, I’ve been freaked since. I went back to the same neuro and told him everything. He looked me straight in the face, and said to go see a psych doc. He told me that he was 99% sure it was anxiety related. He did a quick exam. Then he told me that since a person like me won’t take his word, he’d send me for an mri of my brain to prove that I have a brain. So I left his office pretty angry.
As far as the anxiety is concerned, yes I have been battling it for years. My pcp doesn’t want to put me on anything for it because he feels that meds only mask and suppress it for awhile. He stated that I should just talk to a counselor of some type, plus exercise. He stated the only thing I should worry about is my cholesterol, for it its high. So there’s everything. Again, sorry if I stepped on anyone’s toes.

 

[rose]

Joe,

You haven't offended me. You've gotten good advice here, and any/all of it can help you. I am glad you were candid about having problems with anxiety, and how your doctor wants to approach dealing with it.

The most important thing for you, is to take responsibility for gaining control of the situation. Don't tell yourself that it needs to be this dramatic thing, so that you have to go to great lengths in hopes of conquering it.

If seeing a specialist would be what it takes to have a confirmation that you don't have a physical cause, then insist on seeing one. If you only are willing to believe a doctor if a physical cause is found, then you are NOT going to make any progress in moving on if nothing turns up though..

Getting off of the internet is good. The advice to go outside is good. I know it sounds overly simplistic, but physical activity helps calm the mind and soul.

Taking the steps to arrange to talk to someone is important, no matter what is wrong or not wrong with you. I'd venture to say everyone could use someone to talk to. That's one of the reasons forums are so popular, but forums are also lay people, who are unable to do much more than offer opinions, and share from their own experiences.

Carpel tunnel can limit normal daily living, I'm glad you've gotten treatment for it. From what I understand BFS is hard to cope with, no one is implying that it is.

About the bulbar symptoms you perceive yourself to have, what you describe is NOT how a person who has confirmed bulbar weakness would describe it. For an instance, as we've already discussed the soft palate/ water up the nose possibility. ...when you say you think you've felt wetness , remember that everything in the mouth, throat, and nasal cavity area is wet or moist, so you're not going to know if something feels wetter than it should. Really.

Good luck to you. ... to paraphrase a quote I read recently: No one ever said life is easy, but its worth it.

 

[joeman79]

Well, i just wanted to update all of you about my situation. I got a referral to another neurologist. I saw him today. I told him about everything that was happening. I told him of my fears of ALS/Bulbar and everything associated with it. he gave me a thorough exam. He told me that if i cant sleep at night, he'd give me an emg . But what he said after that stuck me as honest a person could be i guess," Look , i see about 20 patients a month who are worried over this. They go on the internet , look things up get freaked and so on. I could go on the internet myself , look up finger pain and come across 1000's of what it could be. Some are legit, some are completly over distorted and arent true. But my practice, my patients, my medical license is on the line when i say to you that i can go to bed at and sleep peacefully knowing that you have nothing wrong with you. YOU DONT HAVE ALS OF ANY KIND." So with that i left his office feeling comfortable with what he said. So im leaving it alone. Thanks for the ear people.

 

[joeman79]

I just wanted to clear something about my post above. He said that if it keept me up at night and if i was that worried, he'd give me an emg. But, he said to me that he sees patients like that all the time. People that have it, and the worriers that dont. But when he said to me that "my practice/license/patients is on the line when i say to you that i can go to bed at night and sleep peacefully knowing that you have nothing wrong with you. YOU DONT HAVE ALS OF ANY KIND." I did feel comfort in his words, so i didnt have the emg done.

 

[hopingforcure]

Congrats, this is what happens most often to people who come on the forum.. :-D:-D Worried. I wish It could be everyone.