Vera, I’ll respond to your message here so everyone can understand, and so anyone can correct me if I’m wrong.
A lot of people have exactly what you’re experiencing. Over several years on this site, I’ve seen descriptions very similar to yours quite often. I know it is very painful, stressful, and maybe even terrifying to go through what is happening to you.
During my wife’s very short life with ALS, I learned a few things about it (she was an experienced medical doctor, and we had many doctor friends). I learn a lot from others on this site, and I read a lot, too. I am certainly NOT the smartest person on this website, though. I just know enough to say that you need to be addressing your concerns to a GP medical doctor, and not to an ALS community. Here’s why:
The pain tells us about the nervous system involved. We have several different nerve systems that do different things. The jumble of spaghetti up top forms our Central Nervous System, and much of that is our mind. Other nerves of different types either transmit feelings from our flesh to our brain, or transmit orders from our brains to the muscles. The peripheral nervous system mostly takes inputs from our periphery, feet, hands and such, and transmits them to our brains where our brain interprets those inputs as pain, cold, hot, numb or tingling, etc. The Voluntary Motor Nervous system, however, carries orders from the intention center of the brain down to the big muscles, mainly in the limbs, and tells our muscles to contract so we can walk or squeeze off a fart on purpose.
If you feel a painful sensation, that’s a feeling nerve telling you something’s wrong. As a result, sometimes, the brain will decide “if it hurts, I’m not gonna make it move much” and so our brains tell the muscles to be weak and don’t try too hard, ‘cuz I don’t want to hurt. Thus, a painful peripheral nerve can cause weakness. Some diabetics get really painful peripheral nerves.
But in ALS, it’s a very different kind of weakness. ALS destroys Voluntary Muscle Nerves in the brain. These nerves are supposed to transmit the “go” signal to the muscle, causing it to contract. But since the nerve is destroyed at the brain connection, your muscle just doesn’t get the message. It doesn’t go. It’s weak. Note that there is no pain, tingling or any other feeling. The muscle just lays there, limp and useless. It can’t come back later. It will never regain strength. Most of all, it doesn’t hurt or feel tired, burning, or exhausted. It doesn’t feel weak. It just won’t go.
So you definitely have a problem, but it isn’t ALS. In fact, you have two serious problems.
Secondly, the Central Nervous System makes us react to the inputs we see, hear, smell, taste and feel.
The CNS will reinforce or weaken connections in the brain because of many things: diet, meds, pressure from tumors, lack of oxygen from dead spots called strokes, or just getting the crap beat out of your at recess can force your CNS to reinforce or weaken connections and so change your instinctive reactions or change your habits or attitude, etc. The mind can make you startle, lift a car off a kid, or make you freeze in panic when you see an elevator.
Atrophy has many causes, too. In ALS, once a muscle has been lying limp and useless for some weeks or months a muscle will lose its tone, lay flat instead of round, and reduce its size. There are other problems besides ALS that cause atrophy.
All in all, your doctors (and us) are pretty well convinced that the problems you’re having do not relate to ALS. You do have pain and muscle control problems that are not ALS, and you also have brain problem that I would get fixed. That problem is severe anxiety. It is preventing you from thinking rationally without knowing it. It seems that you just can’t let go of worrying about ALS.
Respectfully, you should stop wasting your time here. Every minute you’re on this website, you’re reinforcing your CNS to think about ALS, and that ain’t good.
