notme
Extremely helpful member
- Joined
- Apr 3, 2011
- Messages
- 2,605
- Reason
- PALS
- Diagnosis
- 08/2011
- Country
- US
- State
- Fl
- City
- Orlando
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.
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.