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brentonjb

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Greetings everyone. I could really use a kind soul for some words of advice or even perhaps reassurance. I've been absolutely terrified this past week over symptoms I continue to keep having. I apologize for how long this might be in advance.

I guess I should preface everything by saying that a few years ago I opted to have Orthognathic Surgery for my jaw. Essentially it's where they realign (break) my jaw, inserting plates, so that my bite (teeth) will come together properly. In addition to that, I also had a surgical tongue reduction. That procedure involves cutting the tongue down the center, and removing a bulk portion to make it fit better inside my mouth. I did this because my surgeon said my tongue was very large, and the likely hood that I would develop sleep apnea afterward was very high. Oh how I wish I had a second opinion, but what's done is done.

A few months after the surgery I informed my surgeon that I didn't regain full motion of my tongue. While inside my mouth my tongue seemingly works fine, and has good range of motion, it definitely has problems when sticking it out of my mouth. The tip is essentially limp and has no muscle to it what-so-ever. Meaning for example, I can not move the tip of my tongue either up down to touch/lick my lips.

As for my speech it's ok I suppose. I saw a pathologist for some rehab and told her that I felt as though my words were slurring, particularly my S's, but she informed me everything was about-normal, and although it was not 100%, it had to be due to the tongue reduction.

Fast forward to these past two or three weeks. I began having some serious weakness/numb feeling in my left shoulder. It kinda goes off-and-on through the day. In fact, one day it's really bad, the next I don't even really notice it honestly. It feels like the kinda feeling you get after you've had a shot I suppose. This same feeling will and has progressed down to about my wrist, along with occasional shooting pain. The pain can be anywhere from my shoulder, my elbow, hand and sometimes even left-side of my neck. It's kinda sharp, but mostly very uncomfortable. Likewise I've also had twitching all throughout the arm, and the entire (legs included) left side of my body.

In addition to that I guess the last symptom I'm having is my tongue. I never really noticed it until I felt as though my voice was getting weaker, a little husky, and needing to cough/clear my throat a lot. But my tongue is twitching a lot. I don't actually physically feel it twitching, but when I open my mouth I can definitely see it happening. Also I feel as though there's a lump somewhere in my throat. But I don't appear to have any difficulty in swallowing. Though it's soar / dry.

So after a consult with Dr. Google (which I know is never good for anyone's well-being), it led me to various websites (including this one) mentioning my symptoms as being one of ALS (or Bulbar ALS) as well as other neuro diseases. Needless to say I've been really scared and very anxious. I hope to make an appointment as soon as possible with a neuro, but would appreciate any insight or words those of you who have dealt with this or similar things might offer. Thank you so much.
 

brentonjb

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Edit: Title meant to say symptoms, not systems. Apologize for any confusion.
 

TedH5

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I do not know what to say or where to begin. Your first mistake as you admited is consulting Dr. Google. I can assure you that what you have described does not sound like ALS. Obviously if you are concerned I would see a Dr. Remember ALS is very rare and often takes a while to diagnose because the symptoms have so many other things it could be and many of them such as twitching are normally benign and mean nothing at all. So nothing to be nervous about, I would put ALS out of your mind immediately. Good luck to you!
 

pumpdoc

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Not ALS, have a good life and see what your doc says, but ALS is not your problem.
 

brentonjb

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Thank for you for the timely response.

Would you perhaps be willing to elaborate a bit on the certainty? At least as it pertains my symptoms.
 

wright

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Hello Brent

The numbness in your arm is a sensory symptom and therefore points away from ALS. The shooting pain down into your wrist also points away from ALS. Both of those symptoms do point towards some type of nerve impingement, which could also cause weakness and fasiculations.

Your tongue problem is almost assuredly from your surgery. A "lump in the throat" feeling is not what you will feel with ALS (anxiety could very well cause it, among other things).

Bottom line: nothing you have shared should cause you to worry about ALS in the least. Go get your symptoms checked if they don't go away . . . not because it would point towards ALS . . . but because it would simply make sense to investigate the cause and get treatement.
 

trfogey

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You already have an explanation for the problems with your tongue -- after effects from your mouth and jaw procedures. It's very likely that the tongue twitching you see is probably a side effect of those procedures as well. There is also absolutely no reason to attempt to tie your bodywide twitching and shoulder pain -- neither of which are symptoms of early ALS -- to the problems in your mouth and come up with bulbar onset ALS.

As to the hoarseness, "lump in throat", throat-clearing, etc., it's wintertime. Low relative humidity in the air, dry air caused by forced-air heating systems, cold-and-flu season -- all plausible (and likely) explanations for the coughing, hoarseness, and other throat discomfort.

Rather than asking us to address each of your symptoms and show how they aren't ALS, you should examine your own reasons for deciding that things that can be explained simply on their own have to be aggregated together and reexplained with something else, even if there is no evidence to support that alternative.

How do your symptoms add up to ALS and why are you mixing apples and oranges to come up with that diagnosis?
 

brentonjb

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First and foremost thank you very much for the informative replies. I think it's wonderful there's a community of this nature willing to help complete strangers coup with fear/pain of such tragic illness.

The truth is I never knew much about neuro diseases until I had these symptoms (weather real or perceived). And now, have the absolute highest admiration and respect for those dealing with and affected by them. I wish I had the intellectual capacity to go into research and discover treatments or ways to help those in need. I want to express that my intention isn't necessarily one searching for a diagnosis, but mostly a scared reaction to things I've read online. Things I seem to be going through.

That being said, outside of just being frightened and concerned, I suppose my main fear is just my voice. The pain in my arm seems to come and ago, and I'm well aware of that. I assumed that, if it was in fact some kind of degeneration, it would not get better and continue gradually getting worse.

However with my voice, it's hasn't been getting better. Much worse in fact. I'm fatigued from talking, and my throat in addition to feeling soar, is also twitching. I completely see that issues with my tongue (twitching / limpness) are likely a result of having surgery. Though it was two years ago. Regardless, I don't understand why my voice/throat are feeling this way. I live in Florida so it's not necessarily cold.

I went to a walk in clinic tonight and had them check for strep, it came back negative. At this point I'm hoping I can just chalk it up to stress / anxiety? Though I'm not aware of such things causing issues with anyone's voice / throat, though I may be misinformed on that as well.
 

Alyoop

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Sounds like it would be a very good idea to go to your doctor and have a check up. Won't do any harm and he can refer you to an ent specialist if he feels the need.

Best of luck
Aly
 

trfogey

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However with my voice, it's hasn't been getting better. Much worse in fact. I'm fatigued from talking, and my throat in addition to feeling soar, is also twitching. I completely see that issues with my tongue (twitching / limpness) are likely a result of having surgery. Though it was two years ago. Regardless, I don't understand why my voice/throat are feeling this way. I live in Florida so it's not necessarily cold.

I went to a walk in clinic tonight and had them check for strep, it came back negative. At this point I'm hoping I can just chalk it up to stress / anxiety? Though I'm not aware of such things causing issues with anyone's voice / throat, though I may be misinformed on that as well.
What did the walk-in clinic say about possible causes for your throat problems, other than" it's not strep?" Did you ask them for an opinion or a referral to a specialist, such as a ear, nose and throat specialist?

When you shortcut the diagnostic process by looking up symptoms on the Internet and posting on message boards instead of consulting your family doctor, sometimes you are going to end up far afield from where you should be. Some of those Internet places are pretty scary, as you've no doubt discovered. Is the anxiety and fear that you've developed as a result of your "research" really worth it?

There are quite a few other conditions that could account for your throat symptoms other than strep or bulbar ALS. You'll probably get a quicker and more reliable answer from your family doctor than you will from the Internet.
 

brentonjb

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What did the walk-in clinic say about possible causes for your throat problems, other than" it's not strep?" Did you ask them for an opinion or a referral to a specialist, such as a ear, nose and throat specialist?

When you shortcut the diagnostic process by looking up symptoms on the Internet and posting on message boards instead of consulting your family doctor, sometimes you are going to end up far afield from where you should be. Some of those Internet places are pretty scary, as you've no doubt discovered. Is the anxiety and fear that you've developed as a result of your "research" really worth it?

There are quite a few other conditions that could account for your throat symptoms other than strep or bulbar ALS. You'll probably get a quicker and more reliable answer from your family doctor than you will from the Internet.
Thank you for the reply Trfogey. I've done my best to stay off the internet lately, as my anxiety levels are really high, but as you can see, it's not working out quite well.

I've set up an appointment with an ENT, but the earliest appointment they have won't be for another two weeks.

As far the walk-in clinic, the doctor's exam was -very- brief, and didn't provide any additional information other than it not being strep. I suppose it's my own fault for not asking questions. Though honestly at that point I was very scared.

These past few days have been really hard on me. As my voice continues to seemingly get worse, I keep going back in my mind and replaying things my surgeon noted about my tongue 2 years ago. How he said that he thought the procedure on my tongue went well, and that this problem with it's immobility is likely neurological. That, and how's there's not any literature for cases where it would lose functionality.

Granted I don't know if due to legal reasons that he would admit to a mistake, or something going wrong for that matter from the operation. I do remember seeing another surgeon shortly after for another opinion. If I can recall, he explained how if a nerve in the tongue was cut, it can not be repaired, and thus would lose it's function. But it was so long ago that I might have wait he said taken out-of-context.

At no time during these visits was the twitching discussed. I was referred to a speech pathologist shortly after because I kept telling people I thought as though I was slurring words. Perhaps it was just the onset of something worse. I don't know and it scares me to even consider it.
 

Alyoop

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Brenton ,didn't you sat the surgery on your jaw and tongue were several years ago, and you were having problems with tongue mobility back then. If so it stands to reason that the problem with your tongue would originate from nerve damage from the surgery. The other question is, was your tongue at rest when looking at fasciculations?

Tongues almost always will twitch when poked out! It's a very mobile organ. I saw an net specialist when I was having choking issues 2 years ago. He examined my tongue when poking out and said " my you have a lot of Fasciculations". It was utter rubbish. I had none when I put the offending organ back where it should be and took a look in the mirror.

I think you are over reacting a bit. Take it easy and let the drs do their thing. Worrying will make it all worse.
Let us know how you get on. We would love to hear, especially as it is almost 100 % good news we get back, and it brightens our day

Aly
 

trfogey

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At no time during these visits was the twitching discussed. I was referred to a speech pathologist shortly after because I kept telling people I thought as though I was slurring words. Perhaps it was just the onset of something worse. I don't know and it scares me to even consider it.
Then stop considering it. Given everything you've said here about your symptoms, there is no reason to believe at this point that you have something like ALS.

Really.

The immobility issues with your tongue and the slurring of words have been there for months, if not years. You know what caused it -- your surgery. If I understood what you implied in your most recent post, you seem to be thinking that you might have been showing neurological symptoms then. Is that correct? What other symptoms were you showing then? Given what you've read about bulbar ALS, don't you think you might have had some progression since then, like not being able to speak intelligibly, or being unable to eat normally by mouth?

Everyone's tongue twitches in your mouth if you leave your mouth open long enough. The throat problems you cite -- hoarseness, soreness, lump in throat, congestion requiring clearing -- can be caused by far less serious things such as viruses or allergies, or even overuse. The problems in your arm -- pain, numbness -- could be caused by a pinched nerve in your neck or shoulder.

It's far more likely that you have several unrelated things going on than something like ALS.

You are the only one adding up the symptoms and concluding that something serious is wrong. You can change that. Stop looking for rare and complicated causes until the simple and more likely causes have been eliminated. Let the doctors tie the unrelated pieces together if they are indeed related.
 

brentonjb

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Got my MRI results back this from my GP this morning.

MRI was abnormal in that I have mild cortical brain atrophy, and some atrophy in the vermis. Can someone possibly give me some insight into what that might be / mean? He's referred me to a Nuero.

And is it related to ALS?

Other than that only new symptom is slight left leg fatigue. Same side of body where my shoulder was bothering me. Knee seems to feel very stiff, and overall leg feels pretty tired. Foot is tingling and feels like it's falling asleep. Noticed some twitching in it this morning. Even while sitting.

Otherwise my strength appears to be ok. I can walk on toes / heels, and still can move around on it. Just kinda feels numb I suppose.
 

brentonjb

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Edit: MRI results and GP (who does internal medicine) said the Atrophy in the brain is abnormal because I'm only 24 years old.
 
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