Question about symptoms, can someone help?

I am having a pretty difficult time. I am currently fixated on the fact that sometimes when I eat, I feel a crumb or small piece of food after swallowing that feels like its stuck to the side of my throat. Not enough to choke, but noticable. I can easily wash it down with a drink of water.

I am a 28 year old male. I have diagnosed Celiac sprue and GERD.

I've had around three years of wide spread body twitching. Sometimes they are confined to one muscle and will last all day, or even a few days but eventually go away, and then re-appear somewhere else on my body.

I know that I clintch my teeth alot and often find my jaw tired and sore. I have teeth marks around the outer edges of my tounge.

I don't have any weakness or atrophy. My doctor refered me to a neuro who looked in my mouth with a flashlight, tested my limb strength and ran several blood tests. He performed and EMG by putting the needles in one leg, and both arms and shocking me. He also did the test where the electrodes were taped to my skin. The results came back clear of any abnormalities. He said my refexes were fine and he did the test where they scrape the bottom of the foot to see a response, my toes didn't curl either way.

He told me he believes its BFS and said if I were ever to notice severe weakness or atrophy I should return because that WOULD point to ALS but as of now there is no concern. That has left me on edge like I need to constantly monitor my body, and I have been.

I'M so scared that its affected me to where people notice, I'm no longer outgoing like I once was, my wife thinks I'm depressed and I can't even enjoy my new son as I am constantly worried I'm dying and the doctors have missed something. I think I am especially worried about the food particles being stuck in my throat because I only recently noticed it, after my neuro appt. Other than a flashlight in my mouth, bulbar ALS wasn't explored. Sometimes I feel tounge tied, but Ive attributed that to my mouth being fatuiged due to me always clintching my teeth. No one has mentioned that I slur my words either.

Is there a chance this is the early onset of ALS? I don't know why I'm having so much trouble accepting the BFS diagnosis from the neuro. I don't mean to be un-compassionate to those who are truely suffering from the terrible disease. I just hope that someone here could help me further put my worries to rest, if they are unwarranted.

Thanks Kindly
B

Hey Tech. Let me start off by saying that I'm 24 years old, and have been going through my own diagnostic process for months.

During this time I've learned quite a bit. Perhaps I can shed some insight for you.

For starters, everyone twitches. Just because you're noticing it now, or it's getting worse, honestly means nothing. Particularly when you've had an EMG done, and it was absolutely clean. That means you -do not- have ALS. Now, could you have it when you're 60 years old? Who knows. Hell, you might even have cancer by then. But that's no reason to dictate how you live your life now. Trust in your doctor, and accept the fact that you're healthy, and get out of this cycle of fear.

Furthermore, a scalloped tongue is not a sign of Bulbar ALS. A lot of people have teeth marks on their tongue. My mom's tongue for example, looks like a shark tooth. It's completely normal, and something you shouldn't worry about. You're talking, eating, and drinking fine, you do not have early onset of anything - specifically Bulbar ALS.

ALS is a very rare, rapidly progressive disease. It's also incredibly rare for someone in our age bracket to develop it as well. Even more so for Bulbar ALS. My advice would be to talk to a Psychiatrist if you continue having anxiety / fear issues. Otherwise enjoy your life! As you've even noted, it's starting to affect those around you. Be the best father you can be. Your wife and son need you to be strong.

And, let me add to that one thing. If you have GERD it's entirely possible that you've got erosion in your esophagus that is causing the throat symptoms you're having. Doctors will usually prescribe Nexium to help heal those erosions.

As he said above: normal EMG/NCV means ALS isn't even in the ballpark, luckily.

Believe me, you don't need to watch for atrophy or weakness--they'd hit you in the head if you had them. For ALS in someone your age, it would almost have to be genetic--which means a parent would have to have it as well. Let ALS go--and get some treatment for the GERD. They can do a test to see if there is damage. GERD sucks--and can even make people feel like they are having a heart attack.

If there IS a sore there--a crumb could very likely be getting stuck on it when you eat.

Tech2237 said:

Is there a chance this is the early onset of ALS? I don't know why I'm having so much trouble accepting the BFS diagnosis from the neuro. I don't mean to be un-compassionate to those who are truely suffering from the terrible disease. I just hope that someone here could help me further put my worries to rest, if they are unwarranted.

Click to expand...

If you have been twitching bodywide for three years and you are not substantially crippled in some, if not all of your limbs, your twitching wasn't and isn't caused by ALS. Most specifically, if you can wash the crumbs you are so hyperaware of down with a drink of water, then you don't have the type of swallowing problems caused by bulbar ALS.

If the assurance of a trained neurologist isn't enough to reassure you that you don't have ALS at this time, then you need the advice of a psychiatrist, not a group of untrained strangers on a message board who have never seen you, don't know you, and have very little, if anything, in common with you.

If you insist on trying to use the Internet in place of real doctors to sort out your problems, you should do some serious research into the connection between BFS and health anxiety. You'll find lots of people just like you at a b o u t B F S dot c o m.

Well, hello my fellow twitcher! I'm quite the twitcher...among other sensory issues. Please get out of here! I'm still here browsing around-- to help people like you--- turn around before you get caught in this nasty spiral of needless worry and stress. Anxiety is probably the culprit. I realized this about myself after countless (and pointless) neuro appts., my gp, and ER trips. Among that, the reassurance of all of the kind people here on this forum. I'm now moving on and attacking my anxiety as a result of all of this worry. Of course, I'm no Dr, and everyone is different, so if your symptoms are that concerning go to the doctor for your reassurance.....and of course if your symptoms worsen. But i bet my house on it, it's anxiety and over sensitivity to your nerves. And you did say you have no weakness or atrophy---which are two of the main red flags for ALS.

I am also making a donation to this sight via my debit card, because i know this disease is fatal, and there needs to be a cure, and every little dollar here and there will help.



I twitch ALL DAY, EVERY DAY, EVERY WHERE. I don't have ALS and it's taken me a long, stressful time to realize this. you do not have ALS. your symptoms do not lean towards it at all.

oh yea---and listen to trfogey--- lots of good info!