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I'm not sure why you're sure it's not Gullian Barre. Did the doctor say it wasn't? Your sudden onset of symptoms much more resemble this disorder--including the sensation issues you describe. Regardless--what makes you think twitching is ALS? By the time the twitching (fasciculations) start--it means the damage has been done. It was months after my hand died before I saw the fascis. MONTHS.

Widespread fasciculations are more likely to be BFS than anything else. What were the results of the EMG? did they show up on it? What areas were tested in the EMG? Arms? Legs? Both?

Was Myesthenia Gravis looked at?

You mention what tests were done--and say 'all negative' but don't say what the doctors think is wrong with you. Normal clinical exam and normal EMG pretty much mean no ALS.

Many people mistake muscle fatigue for true muscle weakness...they are not the same thing. Muscle weakness is not being able to open a jar or button a button, or grasp a zipper to pull it up. In the legs it's falling because of foot drop.

There are many kinds of post-viral things that can be going on. Your symptoms sound like how I feel when I actually HAVE the flu. Generalized weakness, fatigue, and widespread pain /discomfort.

Another possibility is Fibromyalgia. It causes feeling weak, muscle pain, fatigue, trouble sleeping, etc. And believe me, it can certainly be debilitating.

I'm sorry--but I don't believe a doctor didn't know how to do a Babinski check--there's just no way. Reflexes are learned early and tested often enough that a doctor won't get 'rusty' in his skills.

You apparently have no clinical signs of anything other than in the thumb and pinkie--if the MRI of the entire spine was normal, that leaves nerves in the arm--cubital tunnel or carpal tunnel are possible, unless NCV ruled them out.

Hopefully, you'll get some answers--but to be honest--nothing in your post remotely sounds like ALS symptoms at all.

With an issue in the thumb and pinkie--that's in line with an injury in the ulnar nerve. What did the NCV show?

Those with ALS almost always start with an INABILITY to do something. Something just plain stops working. A hand that won't close. A foot that drops when taking a step. Slurred speech in the case of bulbar. What they DO NOT start with is fasciculations. It's a late sign, not an early one.

MMN and CIDP would have shown something in the EMG.
 
My neurologist said that my case is slightly confusing, but that at this time she had no serious concerns of a neurological problem..............Don't get me wrong, I'm thankful for that opinion and it was very helpful to me when I got it, but I haven't seen a neurologist in 10 weeks and my symptoms are getting worse.

What symptoms are getting worse? From what I read below, the only symptom that vaguely resembles an ALS symptom that you have is fasciculations and the way they started and progressed points the other way -- away from ALS and toward something like BFS.

And, for the record, how many and what type of doctors have you seen in the past 21 weeks?

The Doctors verified the fasciculations. Two Doctors agreed that there was something wrong with my thumb, but stopped way short at claiming it was do to a neurological disorder. Ohterwise there was no obvious clinical weakness in my exam...... again this was quite awhile ago now.

Since all of this started for you not even five full months ago, none of your evaluations can be considered to have been done "quite awhile ago." That's your health anxiety whispering in your ear and leading you to exaggerate things in your mind and, subsequently, to your doctors and to us.

Did the doctors tell you what they thought was causing the weakness in your thumb? Have you considered seeing a hand specialist, especially now that your little finger is also showing a loss of range of motion?

My thumb and pinky finger of my right hand no longer have complete full range of motion. Other than that I don't have any body part that remotely resembles a state of paralysis.

Have you let your current doctors know that your little finger is also getting a little wonky? And how does that loss of range of motion in your thumb and pinky affect you? Have you let your current doctors know that your little finger is also getting a little wonky? And how does that loss of range of motion in your thumb and pinky affect your daily activities?

Random question: do you know what an adjuvant is?
 
What symptoms are getting worse? From what I read below, the only symptom that vaguely resembles an ALS symptom that you have is fasciculations and the way they started and progressed points the other way -- away from ALS and toward something like BFS.

And, for the record, how many and what type of doctors have you seen in the past 21 weeks?



Since all of this started for you not even five full months ago, none of your evaluations can be considered to have been done "quite awhile ago." That's your health anxiety whispering in your ear and leading you to exaggerate things in your mind and, subsequently, to your doctors and to us.

Did the doctors tell you what they thought was causing the weakness in your thumb? Have you considered seeing a hand specialist, especially now that your little finger is also showing a loss of range of motion?



Have you let your current doctors know that your little finger is also getting a little wonky? And how does that loss of range of motion in your thumb and pinky affect you? Have you let your current doctors know that your little finger is also getting a little wonky? And how does that loss of range of motion in your thumb and pinky affect your daily activities?

Random question: do you know what an adjuvant is?

I have seen two Neurologists, one as a primary and one that conducted the EMG. I have seen my PCP and a DO. So four in total.

The symptoms that are getting worse are the dorselfelxing issues, grip issues and the twitching.. As well as stiffness, but the alarming difference is the breathing issue and my voice going hoarse. I admit that perhaps the breathing part could be a perceived thing, but the difference in the voice is hard to deny.---> I forgot to mention that in any of my earlier posts.

Point taken on the "quite a while ago" statement. If I could edit my post I'd take that out. Thank you.

I haven't had the opportunity to tell any Doctor about my pinkie finger yet.

My Doctors have not ventured to explain my thumb issues. I should probably start considering seeing a hand specialist.
 
I'm not sure why you're sure it's not Gullian Barre. Did the doctor say it wasn't? Your sudden onset of symptoms much more resemble this disorder--including the sensation issues you describe. Regardless--what makes you think twitching is ALS? By the time the twitching (fasciculations) start--it means the damage has been done. It was months after my hand died before I saw the fascis. MONTHS.

Widespread fasciculations are more likely to be BFS than anything else. What were the results of the EMG? did they show up on it? What areas were tested in the EMG? Arms? Legs? Both?

Was Myesthenia Gravis looked at?

You mention what tests were done--and say 'all negative' but don't say what the doctors think is wrong with you. Normal clinical exam and normal EMG pretty much mean no ALS.

Many people mistake muscle fatigue for true muscle weakness...they are not the same thing. Muscle weakness is not being able to open a jar or button a button, or grasp a zipper to pull it up. In the legs it's falling because of foot drop.

There are many kinds of post-viral things that can be going on. Your symptoms sound like how I feel when I actually HAVE the flu. Generalized weakness, fatigue, and widespread pain /discomfort.

Another possibility is Fibromyalgia. It causes feeling weak, muscle pain, fatigue, trouble sleeping, etc. And believe me, it can certainly be debilitating.

I'm sorry--but I don't believe a doctor didn't know how to do a Babinski check--there's just no way. Reflexes are learned early and tested often enough that a doctor won't get 'rusty' in his skills.

You apparently have no clinical signs of anything other than in the thumb and pinkie--if the MRI of the entire spine was normal, that leaves nerves in the arm--cubital tunnel or carpal tunnel are possible, unless NCV ruled them out.

Hopefully, you'll get some answers--but to be honest--nothing in your post remotely sounds like ALS symptoms at all.

With an issue in the thumb and pinkie--that's in line with an injury in the ulnar nerve. What did the NCV show?

Those with ALS almost always start with an INABILITY to do something. Something just plain stops working. A hand that won't close. A foot that drops when taking a step. Slurred speech in the case of bulbar. What they DO NOT start with is fasciculations. It's a late sign, not an early one.

MMN and CIDP would have shown something in the EMG.

Myasthenia Gravis I brought up to my PCP and was never discussed with my neurologist.

My Neurologist said GBS would of gone to an Acute phase fast and that it would have solely started in my feet. Mine started in my arm, so that led me to inquire Lew Sumners, but that was immediately shot down.

I shouldn't have made that comment about the possibility about the DR not properly performing the Babinski test. That was probably inapropriate on a couple levels. Thank you.

Just for the record, fasciculations were not my first symptoms. First symptoms were the pressure in tightness in my arm and hand that started to effect dexterity and motor function in my right hand... followed by the weak feelings, weeks before the twitching started.

When I had the EMG the Doc didn't really go into any details, just said that it was clean.

Overall, thank you for your response, that was helpful and a good reality check. thank you.
 
I believe that when the docs say symmetrcal , it is related to the presence of damage on the emg showing in both limbs and not the physical presentation of what you see or feel in the in the limbs. You can have symmetrcal nerve damage but the limbs do not have to have equal or identical symptoms.
 
Carpal tunnel can do that to your hands, if you're a silk screener... you're doing repetitive motions with it. Not the answer, but maybe part of your symptoms... remember not everything that is wrong with any of us can be attributed to ALS. My back hurts, but that's a bit of arthritis, not ALS...
 
The symptoms that are getting worse are the dorselfelxing issues, grip issues and the twitching.. As well as stiffness, but the alarming difference is the breathing issue and my voice going hoarse. I admit that perhaps the breathing part could be a perceived thing, but the difference in the voice is hard to deny.---> I forgot to mention that in any of my earlier posts.

What is so worrying about your dorsiflexion? And, frankly, you don't want any doctor to find a progressive weakness there if you enjoy driving an automobile. And since you haven't mentioned any difficulties with driving or tripping on steps or doorway thresholds or carpets, I'm guessing this is another one of the symptoms that the doctors couldn't verify.

Breathing issues -- get your PCP to check it, refer to pulmonologist if needed. Hoarse voice and any swallowing issues -- get PCP to check, refer to ear, nose, and throat (ENT). Grip issues -- try an orthopedist or sports medicine specialist. Followup with the neuro about twitching.

Just for the record, fasciculations were not my first symptoms. First symptoms were the pressure in tightness in my arm and hand that started to effect dexterity and motor function in my right hand... followed by the weak feelings, weeks before the twitching started.

How many weeks before the twitching started? And when did you start researching ALS?
 
What is so worrying about your dorsiflexion? And, frankly, you don't want any doctor to find a progressive weakness there if you enjoy driving an automobile. And since you haven't mentioned any difficulties with driving or tripping on steps or doorway thresholds or carpets, I'm guessing this is another one of the symptoms that the doctors couldn't verify.

Breathing issues -- get your PCP to check it, refer to pulmonologist if needed. Hoarse voice and any swallowing issues -- get PCP to check, refer to ear, nose, and throat (ENT). Grip issues -- try an orthopedist or sports medicine specialist. Followup with the neuro about twitching.



How many weeks before the twitching started? And when did you start researching ALS?

dorsiflexion deficits have resulted in my tripping over flat surfaces and thresholds. At my work there are elevated rubber mats for standing at work stations, I trip on those fairly regularly, which I didn't do before these symptoms started. This is why I worry about dorsiflexion. And you are right, I am thankful that no doctor has detected progressive weakness there.

I will mention your suggestion regarding the breathing issues to my PCP. Thank you for the advice

The twitching started approximately 10 weeks after my first observation of these symptoms. I came across ALS literature probably a month later. I had never heard of it before that.

Thank you for your insights and sharing your knowledge with me.
 
I had the shot and within a few hours started feeling pressure building in my forearm and bicep right around the joint, by the next day it had traveled down my arm into my hand effecting dexterity. I was so baffled by what was going on. I was having difficulty typing and taking money out of my wallet. I was fumbling with a computer mouse and the POS system at my work. That night I felt a this sort of odd sensation in my knee joint and that was when the twitching started.

I've realized Ive said some contradictory things about when the twitching started in relationship to my other symptoms. They definitely did not start on the same day that my other symptoms started. I don't know why I wrote that. The feeling in my knee was odd, almost like a tight ticking, but it wasn't Fasciculations..........The Fasics started somewhere between five and ten weeks after my symptoms started. And it definitely wasn't until the beginning of march that I started researching and worrying about ALS
 
What did your doctors say was wrong with you during those first 5-9 weeks? And did the twitching start before or after Valentine's Day?
 
What did your doctors say was wrong with you during those first 5-9 weeks? And did the twitching start before or after Valentine's Day?

My Doctors had no explanation for what was wrong with me, really. They thought the symptoms warranted all of those tests, but they have come back negative so my Docs don't have serious neurological concerns.

I'm not exactly sure when the twitches started in relationship to Valentines day, I don't really know when that was, but I think they began somewhere in the beginning or middle of february.
 
It is 40 days from December 22 to February 1 -- two days short of six weeks. Did you go to a doctor with your complaints of pressure, loss of dexterity, difficulty typing, difficulty taking money out of your wallet, and difficulty operating a computer mouse in those 40 days? If you did go to one or more doctors during that time, what happened during those examinations? If you didn't go to a doctor during that time, why didn't you? From the description of the problems you were having, I would think that you would have been banging down doors to figure what was wrong with your dominant hand.

And, given your previous remark that you didn't start researching ALS until the beginning of March, there was a two to four week period during which you were twitching with unexplained symptoms in your arm and hand. What were you doing about these problems during that time?
 
Oops, does somebody have their timeline messed up?
 
i had four emg's and nct's, five neuro's, includes second opinion before accepting this monster. believe me you will definately know when it really als
 
I cant remember if your problem is the toe or the finger. Either way you would have clinical weakness which u do not have. You obviously are not going to believe Us or your doctor until Someone tells you that u do in fact have ALS. SO.... You have ALS. Your first step now is to go buy life insurance before you go back to the doctor. Then enjoy a few months of tanning and going shirtless because you need to get a feeding tube in 4 months. Your ALS isy progressing faster than is normal
 
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