Young 24 years Extremely worried....please help

[young_worried1]

Hi All,

I really appreciate all of your insight and would like to hear what those of you who are educated on this disease and illness might have to say.

Firstly, I'm a 24 year old male in Toronto Canada. I should probably start by saying I have extreme anxiety that I do treat with prescription medication. Much of my anxiety for a good portion of my life has been based on health fears and health phobias. Some of the diseases I've become obsessed with over the years include HIV/Aids etc.

I've long had trouble with my breathing, and of course have had numerous tests done by doctors (routine blood, xrays, ultrasound on chest/lungs etc) which all come back normal. My doctors have always attributed this breathing difficulty (which is not everyday but now and again) to my general anxiety.

I would say over the last few weeks I've noticed a new symptom with my swallowing. This does not happen everyday or everytime I eat, but occasionally...I would say it's happened maybe once or twice a week over the last month. What basically happens is I'm drinking something, and I for some reason choke on it, almost like when you drink too fast and it goes down the wrong tube. This has happened here and there but only with drinking, not eating, and has not happened frequent enough where I've mentioned it to my doctor although I plan to when I see him next.

Anyway, that's just a little background on me and my current symptom. Yesterday...literally one day ago a friend of mine was talking to me about this new ALS Ice Bucket challenge that's been happening around the world. I seen many people do the challenge but had no clue what it was about. She educated me on the movement and the disease itself and went into great detail about how the illness works. This immediately freaked me out. Over last night I did a lot of ALS research via google and learned about the disease and symptoms etc.

Well literally a day later my right arm now feels weak, even when I hold my cell phone to my ear for too long my arm sort of cramps, I noticed a minor twitch in my right leg and I just can't stop obsessing that I have ALS.

I read that a small percentage of ALS patients can get "Bulpar" symptons first as oppose to muscle weakness in legs etc. Apparently it can first affect your ability to swallow and cause slurred speech. Immediately I connected the fact that a few times lately I've choked while drinking....Now swallowing just feels funny to me and I'm super preoccupied to the point where I'm driving myself crazy. I'm afraid I have ALS and my symptoms are starting as bulpar with my swallowing maybe.....

What's wierd is, the only time I've ever noticed any muscle issues was today directly after hearing about ALS and researching it.

Anyways, let me know what you guys think based on what you know of this disease?

Thanks!

 

[Atsugi]

I read and considered every word and every symptom you wrote, and I think you're right: you have health anxiety.

There's no way you have ALS.

 

[young_worried1]

Thanks for reading Astugi, but what about early onset Bulpar? I read in the "stickies" section that the first sign is difficulty swallowing liquids.....

 

[GregK]

It's bulbar.

Your issue is anxiety. Work on that. Stop obsessing over fatal diseases that you bend your symptoms to fit.

If your concern survives addressing your anxiety, talk to a doctor. The doctor can look at your actual symptoms and help you plot the best path

 

[skipper66]

You have anxiety which is causing all your symptoms including the swallowing issues. I work in a hospital and see it quite often. You need to get help for it. Please for your well being leave this forum. Google instead relaxation techniques and see a good therapist. Good luck to you. Anxiety isn't a fun thing to deal with either.

 

[Mediasmart]

I wonder if all the ALS attention of late will draw out more and more of the anxiety folks as they search for the worst...and hadn't previous considered or knew about choosing this fun disease.

 

[skipper66]

Media smart: I think it is bringing more people to this site. But, in my opinion too there are a lot of heartless people who get on who try to make a joke out of this disease. Like saying I noticed symptoms while having a bowel movement and all their other b.s. I have anxiety too so I do understand it. Some people truly are scared. But, these 20 some wannabes just think a terminal illness is funny. They frankly can kiss my -------.

 

[Dusty7]

Have to agree with the others. It sounds much more like anxiety than ALS.

 

[young_worried1]

ALS still worried...non conclusive tests..help !

Hi Guys,

So since this ALS scare I've seen two regular MD's and one specialist. He's not a neurologist but apparently one step below, he's called an "internist" or something like that. Apparently they wont refer you to the neuro unless the internist see's you first and finds reasonable issues large enough to make a neuro referral.

The reason I canno't seem to take ANY of these doctors findings seriously is because of the way they do these "tests" there's no EMG done on me the way others on this forum have gotten. They make me close my eyes and touch me in places and check if my senses are working...they've looked in my mouth to make sure my pallette and tongue are not paralyzed or responding slowly and are working...they bang on my legs and arms with little doctor hammers and do strength tests on my arms and legs.

According to the internist he's found not one reason to send me to a neuro and says in his profession he's treated only 2 patients with ALS because it's apparently that rare and he's not allowed to say anything is 100% but he's confident in telling me I don't have ALS and he's 99% sure I don't.

Hearing that you guys get EMG's done makes me wonder....how do I know for SURE I dont have it without having these tests done?

Lastly, my main concern was bulbar because I noticed stuff with my mouth. It's hard to explain, I have not slurred or anything yet, but it FEELS like I'm about to slur. I basically feel like I'm putting so much effort into my speech when I talk and actually my throat and tongue muscles just feel soar after even talking for too long sometimes....according to them all of my "occular" nerves are working, and my pallete is responsive etc etc so they don't think it's ALS but I do feel like I'm having trouble speaking by focusing so much on it and it feels like my tongue is sort of shutting down at times.

Secondly, I've always had breathing issues...related to my anxiety as I mentioned before...my breathing issues aren't every single day but what if it's onset bulbar or onset diaphram?

and the last symptom is twitches..I've had one in my face by my right eye for two days off and on now...and strange twitches in my upper thighs at times...the internist also says this didn't "alarm" him.

My biggest fear is, maybe I'm not showing "enough" symptoms in his eyes YET because the ALS is just starting and maybe in a little while these feelings will worsen and actually turn into strong symptoms....

Please tell me what your thoughts are....they are trying to send me to a pyscho therapist this week for some reason.

 

[Atsugi]

Re: ALS still worried...non conclusive tests..help !

Hi, YOUNG_WORRIED.

he's called an "internist" >>> The internist is an "internal medicine" doctor that specializes in adult medical issues. That's a very well qualified doctor. This Doctor of Internal Medicine has specialized training that takes years to complete. I trust them.

he's 99% sure I don't >>> I agree with him that you don't have ALS.

there's no EMG done >>> You described several tests he did to measure your reflexes and strength. Those tests seem simple to you and me, but they tell him a great deal. For one thing, those tests told him that you don't have any symptoms of ALS. You see, doctors should only perform tests that will tell them something new, and an EMG in this case would certainly turn up nothing, so he's not going to send you to a neurologist to get an EMG.

my breathing issues aren't every single day >>> That's great! Because in ALS, once a nerve is affected, it's done for--dead. It doesn't come back the next day.

they are trying to send me to a pyscho therapist >>> That's a good thing. The psychotherapist will be able to sort out what's wrong, and get you on the path to feeling better. Good luck.

 

[Mediasmart]

Re: ALS still worried...non conclusive tests..help !

Hi Guys, The reason I canno't seem to take ANY of these doctors findings seriously is because.....
.

Are you kidding me/us? Get lost.

People have been nice to you. I've had a day when I can walk about 40 feet and lift a glass of water with only one of my arm/hands; the other is a noodle.

Your type of anxiety crap makes me crazy. I'm the soul of patience. You rest just outside my limits.

 

[young_worried1]

Re: ALS still worried...non conclusive tests..help !

Thanks again guys and for Media, I am sorry to hear of your troubles. I truly am. And I can see how someone with anxiety over a very real and fatal illness can be annoying. I realize you are taking note on the part where I say " the reason I can't take the doctors analysis seriously." Sure I recognize how foolish that sounds but what I've read about Bulbar onset (which is my concern) is that it's different for everyone and starts out as a slow progression where you have slight trouble pronouncing certain words....this is something I've started to notice over the last week. Some people state this went on over 9 months from slight trouble to intense not speaking at all type of deal.....So my concern is what if bulbar is JUST setting in, JUST starting..at a point where the symptoms aren't "there" enough for the doctors to actually be concerned. But I myself notice them....do you see where I'm coming from?

Thanks again

 

[young_worried1]

So to clarify what I mean in more detail:

I'm worried about this ALS despite the internist saying no findings because I read forums with people saying when it starts in the mouth they had very minor changes in speech...a little trouble pronouncing certain words and over a period of say 9 months to a year and it ended where they couldn't speak at all...

lately I feel like I'm having a bit of pronunciation difficulty and i'm focusing so closely on my speech my tongue feels funny....
so what if the reason the doctor doesnt see it right now is because it's just in a very early stage
and maybe a month or two from now I will be slurring my speech to a noticeable degree...that's basically all I'm saying...or am concerned about. hope that makes sense...

 

[affected]

Honey you are so young to have this anxiety!

What good would it do you to know now? My husband died of bulbar onset MND. Sure at first his speech and swallowing issues were slight, the emotional lability was huge though. His anxiety was pretty much zero.

We got to live a good 6 months only suspecting something was wrong, never thinking once that it was a terminal illness and we lived a wonderful 6 months. Then several more months to be diagnosed, still with lots of hope.

Since there is no cure, finding out now won't help you a single bit.

You are better off working with doctors, believing them, and staying calm as your symptoms DO NOT sound like ALS, they sound like extreme anxiety and you can get help for that, and you can even work through and be cured of that! You may convince yourself that what you 'feel' is like what you read, but I can assure you it is not. PALS 'feel' perfectly normal, their bodies fail them. All the stuff you are 'feeling' is anxiety induced. Please find help for that, rather than posting here. We have helped you and many have answered you. You can't just keep trying to add to your symptoms now.

Wishing you the best.

 

[ECpara]

A psycho therapist is precisely what you need. Everything you are saying and experiencing is anxiety driven. Seek the help you need! You DO NOT have ALS.