Experiences like pain, electric shock feelings, tingling, etc. are not symptoms of ALS and also, if you did have ALS your twitching would not have gone away. It would continue as muscles become profoundly weak. Sensory feelings like tingling are just that, sensory nerves as to where ALS affects motor nerves. In ALS, the motor nerve no longer works to control the muscle and the muscle wastes and weakens (really profound weakness) that keeps people from climbing a flight of stairs or holding a coffee cup. Or in the case of bulbar ALS you would not be able to chew and swallow your food.
As for BFS, it DOES have all of those sensory symptoms. I have tingling, twitching, pain, eyelid twitches (which are caused from anxiety, caffiene, etc.) And BFS twitching DOES come and go. It's quite common with BFS.
I have also had a very sore lower back that can go for days on end. It is on the left side which is the same side I get my twitches on. It causes pain from my hip to my toes, my leg gets tingly, sore, numb, you name it.
You don't have ALS. If your muscles were wasting away and atrophied and you havd trouble even performing the simplest of daily functions like gettng the lid off a jar or turning a key in a lock, then you might want to start to think about seeing a neurologist.
I know I didn't have any weakness, just a lot of twitching, I went to the neuro and got an EMG to put my mind at ease. But really, the neuro will have a good feel for what's going on during the examination. Basically, ALS is a disease of weakness and not a disease of twitching. And remember, not mild, perceived, "oh I think I might be feeling weak", but real clinical weakness that is debilitating.
Hope that can put your mind at ease. And welcome to the BFS club. You'll find MANY here who have the same experiences as yourself, and none of them have ALS.
Quotes from top Neurologists:
"The disease does not affect the person's ability to think. It does not produce abnormal sensations (tingling or numbness) or loss of sensation."
"ALS does not give a patient pain, so I would not think he has ALS. Muscle weakness, fatigue, cramping, without sensory changes, an abnormal EMG that shows positive sharp waves, fasciculations and maybe fibrillations are the hallmark of ALS."
(notice you have sensory changes. and also, cramping is common in BFS but in ALS it occurs LATE in the disease by which time, you'd have some serious weakness and other problems by now)
Here are the symptoms of BFS:
What are the symptoms of BFS?
BFS usually starts in the calves of the fingers / hand area, but in reality, it can start anywhere on your body. It usually starts with a little twitch like you normally get on occasion, but this twitch just won't go away. It keeps going, and going, and going. Usually, this will last a few days and the twitch will either stop and move somewhere else, or that twitch might stay and more will pop-up elsewhere. Along with the twitches comes aches, pains, stiffness, tingling, numbness , tremors, visible and non visible shakes, pins and needles, body jolts, fatigue and an ever changing variety of twitches that go from little tiny one's that you can see but not feel, to great big thumpers that can move a whole limb. Other symptoms can be cramping and pain. BFS with cramping is known as BCFS, aka “Benign Cramp Fasciculation Syndrome", and it is just about as common as regular BFS. Exercise intolerance is another common symptom, where you do a little bit of exercise but afterwards you feel like you just ran the Boston Marathon and the pain can last for several days afterwards. Twitching can increase dramatically after exertion or exercise as well. Fatigue is another very common symptom and can be mistaken for weakness associated with ALS, and most of the time, it IS mistaken for clinical weakness. Fatigue can be felt as a "drained" feeling, lack of energy, weak and/or rubbery legs or arms and so on.
Take Care,
Troy
time to put some music on and close my peepers ..