I always wondered how true the Clinical weakness standard for ALS is. However, I have read from many scholarly papers from top Neuro specialists that when ALS starts it starts with one muscle and sometimes it is not obvious and sometimes it is. Some patients do wake up one day and can't lift a gallon of milk or they can't do a calf raise. Or fall for no reason. Your right it has to start somewhere, but without true clinical weakness and a decent amount of time that has already passed, it does look like it is probably something else.
I have been going through the ALS scare since March. I have had MRI's, Spinal Tap, Clincal Exam and vast amount of blood work. Everything has been negative. My symptoms have gotten much better. My twitching is body wide and has been for 11 weeks. Started when I noticed a twitch in my hand and I googled it and all hell broke loose. Within one day, my whole body was twitching. I told Neuro and he told me to stay off Google. In March I could barely lift my fork to my mouth. Now I can easily do it. I still have some percieved weakness. My twitching I only feel maybe 20-40 per day.
I hope for your sake and your children they will figure out what is going on with you and it's something that is treatable.
It sounds like it's been 9 months of symptoms, I would have imagine that ALS would have reared its ugly head in an obvious way by now. You definitely got something going on, but doesn't look like ALS.
Thanks for taking the time to reply!
On my clinical exam, I had some brisk reflexes but no Babinski or Hoffman's. I have not shown clinical weakness by Dr's standards. I used to lift a lot of weight and was pretty strong in my past life, but now over the last few months I have problems holding my young kids for very long. To put it in perspective, four or five months ago I could do 50 lb dumbbell curls for sets of ten without a problem. I also used to run distance in college and a few months ago could run three miles out of shape in 24 mins. Now, I can't walk three miles without feeling like crap for days. I have heard the argument before that without clinical weakness determined by a Dr a person shouldn’t worry, but wouldn't something like a motor neuron disease have to start somewhere? I just feel like people aren't suddenly paralyzed by something like ALS. They gradually lose ability over time.
My EMG Interpretation from 3/19/15 reads as follows: There is membrane instability and increased spontaneous activity in the left FDI. There are no abnormal MUAP's, CRD's, fasciculation’s or myotonic discharges present in this muscle. There are no other abnormal EMG findings in the upper or lower extremities, and left ulnar motor and sensory nerve conduction studies are normal. These isolated finding are not consistent with any focal lesion and there is no other electro diagnostic evidence of radiculopathy, plexopathy, perripheral neuropathy or myopathy at this time. (L. FIRST D INTEROSS: IA+1, Fib+1, PSW+1)
At the beginning of March, I watched as part of my hand that had been twitching since December developed a half dollar size indention. This is the same area that showed spontaneous activity, f-waves, and insertional activity in the EMG. Both my wife and mother noticed the muscle loss as well. However, widespread denervation was not picked up on the study.
The twiching in my left hand between my thumb and pointer finger twitches consistently throughout the day. It will twitch a number of times then stop for a minute or less and then continue again. This happens all day long. I have spots on both feet that do the exact same thing. I also have big muscle twitches randomly in my body, but they usually jerk a few times then stop.
I have had an MRI on both my head and cervical spine with a slight bulge on the cervical spine. The neurologist said that the bulge wasn’t significant enough to cause these problems.
I have tried to tell myself that my body is fine and it’s all in my head. But, I have constant reminders everyday that convince me otherwise. My fingers on my left hand specifically the pinky and ring are very hard to type with. My body feels fatigued all the time, and I get cramping in my hands, legs, and feet along with shaking and twitching. I am not sure what this is, but it is definitely scaring the crap out of me.
Did you have a clinical exam?
What did the summary on EMG say? Fibrillations are consistence with ALS or other disorders. Was widespread denervation picked up on EMG?
Have they done a MRI on your Neck? There could be a pinched nerve somewhere.
You say your fasicualations are constant? What do you mean? Like they never stop in your hands or feet? Body wide twitching usually is not ALS, or it does happen but later in the disease.
By weakness do you mean perceived weakness? Or Clinical?
I hope you have something such as a pinched nerve, ALS is a horrid disease.