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joni51

Senior member
Joined
Sep 8, 2010
Messages
992
Reason
Lost a loved one
Diagnosis
10/2010
Country
US
State
Al
City
Valley
My husband started having problems with lots of saliva to start with and within a few months, slurring, and then twitches in arms, legs, shoulders, now the neurologist said he saw them on his tongue. When he sleeps he jerks around alot is that usual? We go to have emg next week. So scared. I lost one husband in 2000 with melanoma, remarried and happy in 2004, now he is losing his job, and now this. Should the twitching have started all over to start with? His mom has some kind of nerve problems that they have never diagnosed, and he said he had twitches years ago, and it was just nerves.
 
Try not to worry too much yet. Twitches and sleep jerks are both quite common and don't mean much, especially if he's had them before. Saliva and slurring could be something minor or something serious. Try to be patient and see what the tests show. Remember ALS only hits one person in 50,000 each year, so the odds are in your favor. Good luck and I hope you get good news from the tests.
 
I am driving myself crazy. I go from crying to praying. He has had bloodwork, had brain mri, cervical mri without contrast last week. The neurologist at first said it was a stroke that just did not show up on the mri, then the twitching started. You can just watch them move, it blows my mind. I can't even sleep next to him because I can feel them and can't sleep. Of course I don't sleep anyway. Have lost down to 110. I am just terrified.
 
My neuro said she couldn't even tell if I had ALS from an MRI. That's after I had 3 of them. She diagnoseded me from an EMG that took 4 hours. Poking needles into muscles. You can hear the noise from the machine if there is damage to the muscle. Then they can diagnosed ALS afterward. Incompetent neurologists from little towns who rarely see ALs patients will immediately refer you to a big city that has an ALS clinic and doctors and nurses who only see ALS patients. But don't worry until the EMG. I didn't have twitching anywhere in my body until a year after my 1st symptom. In my experience muscles have to give up the ghost for awhile before they start calling for motorneurons. That's what an ALS twitch is--muscles screaming for a signal from a neuron and the neuron is dead. I know it's futile to say don't worry. But if the EMG is clean, you can worry about something else. I hope so, for your famiily's sake.
Carol
 
Thanks Carol and Hal. I appreciate the pep talks. Just down right now. Also worried about him losing his job. Just scary times.
 
Joni, I don't know this for a fact, but I don't think your husband will get the ALS diagnosis. All over twitching just doesn't show an ALS start. Weakness is normally before any twitching, and it begins in one area, not all over. Honestly, it sounds like his old "nerve problem" has come back, especially when you say he's losing his job. Try, please, to keep from expecting the worst... that fear makes it harder. I know it's hard to do, but please try. And, also, read in the section called "Do I Have ALS? Is This ALS?" where there are some really wise, well educated folks answering questions. In this "General Discussion Section" you get people like me, who aren't gifted in this area giving you feedback. (NOT including Hal or Carol); but really, you never know how well educated we are. You're better off to stay in the "DO I?" until or unless you do get a diagnosis. Warm hugs to you.
 
I have those night-time muscle jerks on occasion and do not have ALS. It can always be something else until it can't be anything else. Like Hal has stated, the diagnostic process is best undergone with a great deal of patience and trust in the doctors.
 
Joni, I just want to echo the great advice and insight everyone else has given you. When your body starts acting in ways that are different from normal it is easy to allow your mind to run away and think the worst. I would caution you against that. The EMG will tell you a lot and no one can be diagnosed with ALS without having "abnormal" emg result sin several areas of their body. I would also say that as others have brought that my symptoms started with weakness. The twitching and other signs came along later. Best of luck to you we will keep you in our prayers and hope for a diagnosis that excludes ALS. Please keep us updated so we know how you and your husband are doing.
 
How do you know if you have the weakness? And thanks to all of you. I pray for all of you! Such kind people on here. He is walking great, no falling or anything, but it does look like he has lost weight in his arms and legs. I can tell that he doesn't seem as muscular as he used to be. Could be from the weight loss though. He is an upbeat person though and says he feels fine. I guess we will just pray that the emg comes back clean.
 
Weakness is when you can't lift the heel (or the toes) on your foot, as an example. Or you can't touch your finger and thumb together. No pain at all, just a lifeless part of the body. No strain or anything. Limp.
 
I first confused my leg weakness with leg fatigue and thought something was wrong with my knee and did not realize how much weaker my left leg was until a Dr started doing tests. The same thing with my left arm. The weakness is noticeable when you test it but I did not recognize it at first. For me if I am sitting down and my wife puts her hand gently on my right knee I can still lift that leg off the ground. If she does it on my left knee without applying excess pressure I can not lift my leg off the ground. Against gravity I am still good but when you add external resistance I am not. So as you can see weakness is not the "perception" that you feel weak but rather clinical weakness.
 
Great examples Ann and Ted
 
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