I saw an ALS neuro at Cedars Sinai last week. He said the exam was completely normal, with no UMN or LMN signs (I have brisk knees and atrophy... but he said normal). He said that even though I had two normal EMGs followed by three abnormal ones (large motor units), he is 99% sure I don't have ALS. He didn't do an EMG.
So that is at least 6 top ALS neuros over the last 9 months saying they are 99% or 100% sure that I don't have ALS. But my symptoms persist, and some are getting worse.
My complete list now is:
-Problems swallowing some solids (need to wash down with water).
-Weak, nasal voice.
-Right facial wasting.
-Wasted left triceps (painful where wasted).
-Bodywide twitching.
-Stiff hands.
-Burning muscles (lactic acid burn feeling) with any acitvity, even crossing my legs.
-Drop things with either hand.
-Arms and legs feel weak and heavy.
-Tremor everywhere.
-Continual pre-cramp soreness in hands and feet, with some actual cramping.
-Insomnia (wake every hour) but no C02 headaches.
-Poor balance
-Anxiety
-Increased sweating.
-Shortness of breath.
The swallowing issue started about 18 months ago, and everything else about 9 months ago.
There is a huge disconnect between my symptoms/EMG results and what the neuros are saying. I still don't see how they can be right. I hope they are, of course, but it still makes no sense to me. I still think that I'm 1 fib or psw on EMG away from ALS.
Does this disconnect make sense to anyone? Could the neuros be right?
So that is at least 6 top ALS neuros over the last 9 months saying they are 99% or 100% sure that I don't have ALS. But my symptoms persist, and some are getting worse.
My complete list now is:
-Problems swallowing some solids (need to wash down with water).
-Weak, nasal voice.
-Right facial wasting.
-Wasted left triceps (painful where wasted).
-Bodywide twitching.
-Stiff hands.
-Burning muscles (lactic acid burn feeling) with any acitvity, even crossing my legs.
-Drop things with either hand.
-Arms and legs feel weak and heavy.
-Tremor everywhere.
-Continual pre-cramp soreness in hands and feet, with some actual cramping.
-Insomnia (wake every hour) but no C02 headaches.
-Poor balance
-Anxiety
-Increased sweating.
-Shortness of breath.
The swallowing issue started about 18 months ago, and everything else about 9 months ago.
There is a huge disconnect between my symptoms/EMG results and what the neuros are saying. I still don't see how they can be right. I hope they are, of course, but it still makes no sense to me. I still think that I'm 1 fib or psw on EMG away from ALS.
Does this disconnect make sense to anyone? Could the neuros be right?