Old 02-15-2017, 12:01 PM #1 (permalink)
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Default Help with AlS symptoms

Hello all,

I was wondering if you all could help put my mind at ease a bit or let me know if any of my symptoms sound like ALS. I read the sticky but hearing feed back from you all would greatly help me.

I am a male and 27 years old just turned on feb 5th. Not the best birthday might I add. I apologize if my story is long but I want to give the full picture.


Early December of 2016 I noticed a small white patch in my mouth, that began to spread to other parts and pop up in different places. Biopsies inconclusive just irritation and no cancer. This process took weeks as after my initially biopsy it started to spread. I was in desperation mode and very worried that doctors were saying it's fine yet it keept spreading. ( they now believe it's lichen planus)

During this process I had blood work done to test for auto immune conditions that all came back clean except for ANA positive at 1:320. On around january 14th I noticed a strange sensation in my right leg like a sense of fatigue and just strangeness. I didn't worry until it started to affect my other leg and eventually lead to cramping feeling and extremely sore. Shortly after this I started noticing twitches all over my body ( if they started in one spot I didn't notice) some are continuous and some feel like they come and go but I'm not sure. ( let me add that from the beginning of my mouth problems to this point I had been barely sleeping through the night and feeling panicked and fatigued. And taking ativan for anxiety.

Of course like an idiot I got curious about my twitches and soreness and googled it and then I went into full tilt. Since then the body wide twitches have been continuing and even feeling some in my throat and tongue. I also felt like my sinus was cramping one day and my throat was tight and painful. Most recently I feel like when I keep my teeth very close together but not touching they chatter and I can feel my jaw twitch constantly when I'm trying to sleeping. I have been able to do all normal things but feel fatigued especially in my left arm that as been fairly persistent.

Neuro did a physical test when my legs were completely sore and and full body twitches were in full swing and I had no problems, said I don't have ALS. But because I have a vast family history of auto immune disease ( MS, polymyocitis, lupus, etc) he decided to do a brain MRI no contrast and an emg in addition to blood work. MRI was good, labs came back all negative, EMG. I will get the full report today for emg, but the dr who did it said at the end that they noted the twitches and some slight muscle irritation most likely due to a pinched nerve in spine. Initially I felt relieved but hearing that there was muscle irritation made me start to question whether it was something that could possibly still be related to ALS or if that is not even associated with it.

She also said the results were not diagnostic of ALS. But one wonders... Would that be a "clean" EMG? Also would a pinched nerve cause facial and tongue twitches??? I started to doubt because while I have some twitches in the right side of my body the left arm and leg is the one that is most troublesome and they did the right side.

Since then I noticed an indent in my left forearm when I flex it and when I try to do a motion that only uses the forearm the top part of my arm becomes sore and tight and I can do less repitions with it with some light weights about 8 lbs. I was wondering if it was possible atrophy and that the top part of my forearm was compensating hence the extreme soreness. After about 6 or seven reps with about 8 lbs it just can't keep going while my right forearm can do much more.

I also wanted to note that 2 years ago I started having a globus sensation in my throat off and on and food getting caught in My throat off and on which I have been seen by an ENT a few times who sees nothing wrong. Also post nasal drip and feeling of flem in my throat. Also I get sharp pain in my ear and inner ear twitches and the feeling of pressure in my ear. Also ringing. And I feel like I'm stumbling over words, not slur but stumble often and have to repeat the word. Could Bulbar take years to fully present? Or is it usually fast acting?

Today I feel shaky when I use my left arm in particular but my right arm does it to but feels more steady. Over all I haven't had any issues doing exercise or picking things up except for things feel heavier in my left arm like when I use it to drink from a glass. I'm right hand dominant so I'm thinking this could account for it but I just don't know anymore.

This is basically ruining my life and my fear and axiety are through the roof especially when I feel a new symptom especially the tongue twitches.

How likely is it that within about a month I could go from strange leg sensation and fatigue then soreness and cramping to full body wide twitches. And it be ALS.

Thank you all for your insight and humoring my insanely long rableing situation. I know you are all going through or have a loved one who is being affected by this horrible disease and I am very greatful for you taking the time and energy to talk with me and read this.

I am just very scared and wanted to hear input from people with some experience. My wife and family can barely put up with my constant panic attacks..

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Old 02-15-2017, 12:54 PM #2 (permalink)
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Default Re: Help with AlS symptoms

Maximus, can you please edit your post to include paragraphs? It's impossible to take in all of that script unless you organize it into paragraphs with breaks between. People here who use eye-gaze technology would find it particularly difficult to parse. You may find you get more response if it's not a chore to read.
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Old 02-15-2017, 01:05 PM #3 (permalink)
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Default Re: Help with AlS symptoms

Yes sorry about that. I hope that is better and thank you!
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Old 02-15-2017, 08:24 PM #4 (permalink)
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Default Re: Help with AlS symptoms

Twitching is so common as to not be diagnostic of anything. I would love to have someone say to me it sounds like a pinched nerve. Yes the EMG would be considered clean. As for the white spots in your mouth, are you familiar with thrush? Anxiety can cause you to focus too much on things that aren't really there.
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Old 02-15-2017, 09:44 PM #5 (permalink)
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Default Re: Help with AlS symptoms

Thank you for taking the time to answer my questions and read my long story Vince you have no idea how much I appreciate it. My neurologist went over the results of the EMG with me and assured me its not ALS. It's just going to take time to accept that as I still feel the symptoms. They considered thrush but the biopsy didn't show that. They are under the impression it is lichen planus which is a pseudo auto immune disease. thank you again!
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Old 02-17-2017, 10:32 AM #6 (permalink)
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Default New symptom help please!!

Hi all question for you

I have been having full body twitching for about a month now from head to toe with sore muscles and some fatigue and cramping. No weakness in arms or legs. Neuro did strength test and emg which showed up as light muscle irritation in leg most likely due to pinched nerve, but no ALS they were very certain. MRI of brain and blood work came back great. Shortly after this I noticed that when I smile the right side of my face and lips shake after I hold it for a few seconds. Also when I close my right eye it also seems to shake the upper part of my cheek. And last night after noticing it a spot under my right eye started to twitch but it stopped by morning and hasn't started up again. Does this sound like anything ALS related?

The dr checked my jaw muscles by pulling on my lips when closed and tested my toungue strength and all was good. I would like to add that I have been extremely anxious lately and every thing that happens I notice very easily. I want to trust the neuro and the emg was negative even though they heard the Faciculations on it. Could they have missed it in my face? I assume if twitches were heard in my right arm and leg it would have shown any signs but I have doubts...

I'm hoping it's just nerves or that I have been clenching my jaw due to stress all day. Any input would be much appreciated. Thank you all!!

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Old 02-17-2017, 12:24 PM #7 (permalink)
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Default Re: Help with AlS symptoms

Mod note- Maximus, I moved your post to your original thread. It helps keep a proper timeline and posts all in one place. Please continue posting in your original thread.
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