Husband is at a low risk for ALS

[Nikki J]

Review the important post on getting a diagnosis near the top of this subforum so you get the most out of your visit. Please return and tell us what happened

My experience and that of my family members were all like grounded’s. Something didn’t work even though it felt completely normal. I also continue to feel normal. So much so although I lost ability to toe walk on my weaker leg over three years ago I continue to try because I can’t quite believe it. I have lost other abilities and test them too. It is a very weird thing to experience and one I did not fully understand until it happened. I remember asking my sister if this was what she experienced and she just said “yep”

 

[Bestfriends14]

My husband's legs have never felt tired. Neither leg can do a heel to toe step, raise the feet upwards, or grab anything with his toes. They just will not do any of those things but his legs have never felt tired.

Marie, what is it that your husband cannot do? Can he do a heel to toe step? Can he raise up on his toes or back on his heels or do a squat? Can he button his shirt or open a water bottle or turn a door knob? If he can do all of those things, that's a very good thing. Not being able to do any of those things is what the members mean by failure to do something.

 

[Mariejan]

My husband's legs have never felt tired. Neither leg can do a heel to toe step, raise the feet upwards, or grab anything with his toes. They just will not do any of those things but his legs have never felt tired.

Marie, what is it that your husband cannot do? Can he do a heel to toe step? Can he raise up on his toes or back on his heels or do a squat? Can he button his shirt or open a water bottle or turn a door knob? If he can do all of those things, that's a very good thing. Not being able to do any of those things is what the members mean by failure to do something.

He can do all these things. Perhaps it is too early into the disease so it hasn’t affected him yet? Thank you for clarifying and I’m so sorry to hear that about your husband.

 

[Nikki J]

I believe your appointment is today? Be sure and ask all your questions to the specialist. Good luck

 

[Bestfriends14]

My husband's earliest sign was tripping because of his inability to do a heel to toe motion. In your husband's case, since he's had no symptoms of ALS none of this would apply to him. That doctor who mentioned "low risk for ALS" was reckless. He's scared you and your husband silly for no reason.

Please, enough with the questions. You're adding new symptoms to ask about everyday, fuelling your anxiety. That does you know good. Again, the symptoms you mention are not indicative of ALS. Period. Your appointment is today, so I truly hope you can find the answers to ease your mind and that it's treatable.

Let us know how things go. Good luck.

 

[Mariejan]

My husband's earliest sign was tripping because of his inability to do a heel to toe motion. In your husband's case, since he's had no symptoms of ALS none of this would apply to him. That doctor who mentioned "low risk for ALS" was reckless. He's scared you and your husband silly for no reason.

Please, enough with the questions. You're adding new symptoms to ask about everyday, fuelling your anxiety. That does you know good. Again, the symptoms you mention are not indicative of ALS. Period. Your appointment is today, so I truly hope you can find the answers to ease your mind and that it's treatable.

Let us know how things go. Good luck.

I’m sorry for the questions. It’s very scary seeing ALS symptoms on various websites and reading different stories and seeing some of these symptoms that my husband has. Unfortunately we just got a call that the doctor is sick so it’s been rescheduled to this next Monday late afternoon. I appreciate you taking the time to write to me.

 

[Mariejan]

I believe your appointment is today? Be sure and ask all your questions to the specialist. Good luck

Unfortunately it’s been rescheduled to this next Monday. Thank you.

 

[affected]

OK rescheduled, only a few days. We can't do anything more til then and you need to stop and do something positive together for the weekend.

This is important - you've become alarmed by reading things that you have absolutely no way of understanding or adjudging reliable at this point.

Pull the plug on the internet for the weekend and do something together.

Come back after the appointment and let us know what your doctor says of course.

 

[Atsugi]

Thanks for posting that list from alsworldwide dot org


God, I hate those internet lists. They are worse than wrong. Very misleading. I read it and now *I* have ALS! Apparently, I've had it off and on for 40 years!




"Does weakness feel like your legs are tired?"


I say again: "You don't feel exhausted, you don't feel weak. You just stand there looking at your muscle thinking ":Why isn't that muscle going?" "Why can't it lift up the toe?" It doesn't feel weak, it doesn't feel numb or weird or anything. It all feels normal. The muscle just doesn't go anymore. And it never will go, anymore, ever. Its nerve in the brain has been destroyed forever.


Weakness (in ALS) is NOT felt. You just fall over. You feel normal, but the muscle just doesn't work anymore.

 

[Lkaibel]

My husband experienced “failing not feeling” exactly. One night he tripped on steps, and it still took us s long while to figure out he could not fully raise his toes and that was why he had fallen.

The reason being that he had no feeling of abnormality. I might add that even when he only had the inability to fully raise those toes (drop foot) he had a floridly abnormal EMG. The short wave abnormalities and the chronic and active denervation were present in his pecs, buttocks, right arm, about both legs. This was months before he would experience symptoms on most of those areas.

Save for the fact that my husband’s EMG showed “multiple non specific abnormalities/Neuropathies” his was a “classic” case of ALS, as much as that can be said of ALS ever.

My point in blathering on about us is that none of that sounds like your husband. Lucky, lucky you.

 

[Mariejan]

My husband had another emg today and saw an ALS specialist. The emg came back normal, above average actually. (I think that’s a good thing?) The specialist did not think he had ALS. The previous emg he had did show some minor issues but the specialist thinks that the placement must have been wrong or there was a malfunction because she did not see why signs of ALS on the Emg. She said some of the things he’s experiencing may be anxiety related and some other things from his current brain fistula he has. It still baffles me though. I was hoping for a diagnosis ( not ALS of course) just to put my mind at ease but I’m so relieved it’s not als. It’s a hard one to believe! Thank you all so much for the comments. I will be praying for you and those affected and will be praying for a cure.

 

[Nikki J]

I am happy he was cleared and hope you can accept the expert opinion and move on. Remember even the initial testing showed only fasciculations on emg and the abnormality was in the sensory part of the ncs which is not anything related to ALS. Now he has a normal EMG and a normal NCS from the neuromuscular doctor as well as their opinion as to symptom cause.

We are very happy for you.

 

[Mariejan]

Thanks. Is it normal for the emg to be done on only one part of the body? The second emg was done only on the leg that showed problems during the first emg. It just seems like to rule out als you’d conduct it on the whole body. His legs still feel sore and according to him “funky.” He says his legs feel like he did a strenuous workout but he hasn’t. The neurologist said if he still has anxiety over als then she’d do another emg in a month. If his legs still feel sore and heavy then he’s going to have another emg done.

 

[Nikki J]

It is usual not to do two emgs so close together anyway. Plus a screening emg does not involve the whole body . He had the second one in a symptomatic area. It was perfectly appropriate not to continue as nothing was found.

For thd nth time ALS is not a disease of feeling but one of failing.

I am closing the thread we have repeatedly reassured you. The neuromuscular doctor said no ALS. Please don’t start another thread