Husband is at a low risk for ALS

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Mariejan

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My husband started out with a weird sensation in the middle of his back with mild pain starting around August. He also started to get numbness and tingling all down the left side of his body. He had 3 MRI’s done and there weren’t any lesions (he was being tested for MS) but did show a very small bulging disc. He was in PT but the therapists thought what he was experiencing wasn’t related to a bulging disc because of it being so small but more of something going along in his neck.

All while being terrified of an MS diagnoses, his numbness and tingling went away but he still had a sore area in his back and just didn’t feel right and still hasn’t. He stopped PT. About 3 weeks ago came the muscle twitching on his left side of his body. Since then it’s become more frequent and occasionally happens on his right side of the body. He had an EMG done and it showed fasciculations and also it showed there wasn’t a signal in his right Achilles’ tendon. He did have a bunion surgery last year and his Achilles repaired. The doctor who did the EMG said it’s common to see that in the ankle area.

Anyways, he’s now put at a low risk for ALS and now he’s absolutely distraught. From seeing him shed just a few tears during a funeral, he now SOBS multiple times a day. The last few days he’s been clearing his throat very frequently and feels like he can’t take a deep breath in, or feels like he can’t breathe in as far as he used to. He also feels a little pain when he lays on his left side and his muscles (mostly in his calf) keep cramping and tighting up. He’s been referred to an ALS specialist to see what exactly is going on. We are both a complete wreck. He’s 35 with 2 small kids.
 

Lkaibel

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I’m sorry anyone even mentioned ALS at this point because of this sensory stuff makes it unlikely.As to some abnormality in the foot, some extremely specific things need to show up in an an EMG to suggest ALS. That does not sound like one of them. Hang tight and try to breath until you see the specialist, I know it’s horrid to wait.
 

Mariejan

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It’s very hard waiting. Especially because it seems the symptoms are getting worse. Or he wakes up every morning with something new. He also feels like his balance is off but he’s felt like that a few weeks ago and he found out he had an ear infection. As soon as he stopped taking his antibiotics, he started to feel his balance was off again.
 

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WTH did anyone even think to mention ALS? None of that is possibly ALS, none!
 

Mariejan

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It just seems like every morning he has a new symptom. The past few mornings he wakes up and then after a few hours goes back to bed saying he’s exhausted, tired and says he feels like his body just feels like it needs to rest. Isn’t that a sign of muscle weakness?
 

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OMG. Please please please take a deep breath. I agree with Mike---none of that sounds like ALS. I can't believe he was referred to an ALS specialist with those symptoms. I hope that your husband gets cleared quickly and finds out what is really going on.
 

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Marie wrote: "goes back to bed saying he’s exhausted, tired and says he feels like his body just feels like it needs to rest. Isn’t that a sign of muscle weakness?"


That's not the kind of weakness we're worried about when we discuss ALS. Here's something very important to know:

-- In most healthy bodies, you feel tired, exhausted or weak when you have worked too hard for your body to rejuvenate. After some rest and water and food, you're good as new.


-- In some conditions, your body isn't rested or passing oxygen to the muscles or getting the proper hormones and nutrition around, so your muscle will feel tired and weak after only a little bit of exertion. That happens a lot when people are sick. This condition should see a doctor to get better.


-- HOWEVER, in the new onset of ALS, it's very different. The muscles do not feel weak. You don't feel exhausted. You don't feel tired. The muscle simply does not work anymore. It can't button up your shirt, hold a pencil, turn a key in the door, or support you while you walk, squat, get up on your toes, etc. The muscle is weak but you don't FEEL weak. Here's why:


-- ALS is not a muscle disease. There isn't anything wrong with the muscle. ALS is a brain disease. ALS is in the brain, in the area of the motor neurons. Normally, these motor nerves send a signal down the spinal cord, down your leg or arm, to the muscle. This signal tells the muscle to contract, and viola! You wiggle your toes.


-- But ALS destroys a motor nerve in the brain, so that nerve can no longer send a "go" signal to its corresponding muscle. So, the muscle is never TOLD to move. So the muscle is said to be weak and doesn't work anymore--but it's really the nerve in the brain that has been destroyed.


-- Notice, the rest of the body is perfectly healthy. And the muscle has done NO work. So it doesn't feel tired. It hasn't done anything. 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.

That's what we mean when we say "weakness" in ALS.
 

Mariejan

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Thank you so much for explaining that to me and your input. What about the increased fasciculations that has moved onto his right side of his body and the cramping, and feeling dizzy or like he might lose his balance? When I read ALS symptoms it says those are symptoms.
 

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Twitching and cramping are very non specific. I don’t know where you read that dizziness and feeling off balance are ALS symptoms. They aren’t. Are there people with ALS who felt those things? I am sure but not because of ALS because they had something else going on too.

I Have fallen but never felt my balance was off. I knew where I was in space it was just that my leg would not hold me up. I felt fine even as I was headed for the floor. I was neither dizzy/ off balance or feeling weak. Just a malfunctioning leg as Mike explained
 

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The balance issue/symptom given by many organizations is not an issue of dizziness, but as I experience it one of changing body capabilities. Before ALS if I lost my balance and stumbled my feet could shuffle to regain balance. Now a stumble cannot be corrected account of loss of strength and motion in my limbs and may well end in a fall. To prevent those falls I now use a cane for short distances and a rollator for longer. When in my home I don’t use the cane, but I do furniture surf to maintain balance. The ALS Clinc I visit recommends exercises to improve balance.
 

Mariejan

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I should also note that the side where the emg showed a possible problem, he feels like that leg is shorter than the other. He’s been checking his toes to see if he is losing muscle because that’s what he says it feels like.
 

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"Feeling like" he's losing muscle just isn't a symptom of anything. The only way we would believe he has atrophy is if you and a doctor both saw it. You know it when it's real, there's no doubt.

Like the others, I don't see any indication of ALS here.
 

Mariejan

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Thanks. He sees his PCP tomorrow so hopefully he can check out some things. This is so scary. The foot thing scares me a bit.
 

Mariejan

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So on the EMG, I was off a little. It showed some sensory problems on both of his legs. That’s why they are concerned along with the fasciculations.
 

lgelb

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If all the EMG showed was sensory nerve problems, not motor nerve problems, there is no correlation with ALS. Sensory nerve problems can be caused by injury, diabetes, MS and much more. But ALS doesn't cause those. Fasciculations aren't necessarily indicative of a motor nerve problem without other findings.

If you could post the report, we could be more helpful.
 
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