ALS confusion
Posted , 3 users are following.
Like a lot here, I have been going through some anxious times of late, more so given my age profile etc. For a few months now (about 3) I have been experiencing muscle twitching. It started in my calf, then moved to my other calf and now pops up almost anywhere and everywhere, but more or less constant in calves and thighs 24/7. I saw a Dr who did the clinical exam and did not seem to see much apart from brisk reflexes on one knee. I then went for an EMG where they picked up the twitches OK, but felt that they seemed to show they were benign (not associated with hallmarks of MND) I have had MRI (Brain) and plenty of spinal MRI's etc but along with bloods its all normal. So I feel that I am in the waiting room again. The problem is that I have stiffness and pain with the twitching, ie in the morning my thighs and calves are stiff as if I had a serious work out, also if I twitch in the arms the same thing in my arms. I also have a tingling feeling almost all day in my lower upper legs like ants are crawling under my skin. What I want to know is that if these symptoms (twitching, tingling, stiffness) are caused by ALS, would they be picked up by the last EMG, or would I have had clinical weakness? There are so many differing stories out there, of people that presented with twitching, were given a benign diagnosis then only to return a few months later with an ALS positive diagnosis. I just don't know what to believe anymore, as I figured if the twitches had been due to stress and anxiety, then once I got a clear EMG they would go away, if anything they are getting worse. Can anyone shed a light on this confusion?
Do I 100% not have ALS, or not? Im due to have another EMG in a few months, but more for reassurance i think, but having doubts and need some good news I guess.
0 likes, 2 replies
peter25615 irish02314
Posted
hi not a doctor but you dont sound like ALS Went through similar experience Got tested to death The more i obsessed the worse it got Try and relax Worst thing i did was let them put me on Lyrica Stopped after three months because of side effects Three months later having a really bad withdrawl time Much worse then all the things you are describing I know that drugs have helped many but you should know there are some of us that it was the worse mistake in our lives Two neurologists have seen me more then once They pretty much know if you have ALS just by being with you for a few minutes Last one i saw who specializes in ALS told me ALS patients don't even know they are having muscle twitches Not their symptom that brings them in Again, best thing you can do is try and relax and think of all the good things in your life
michelle70460 irish02314
Posted
Hi. An EMG is the gold standard for detecting ALS. If you had a clean EMG then you don't have it. Even in early stages it will be picked up. Also, with ALS, twitching does not start until much later in the disease because the muscle is dying. Clinical weakness is the hallmark symptom. For example, some people may experience a footdrop where they keep falling over. Others may keep dropping things due to weakness in the hands. ALS is more about failure rather than feel. You seem to have alot of twitching in different parts of your body & this is not consistent with ALS. Hope this helps & good luck with your diagnosis.