Old 09-22-2018, 12:25 PM #1 (permalink)
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Default Potential ALS Question

I'm a 47 year old male. In May, I noticed a tremor with movement in my hands. My initial diagnosis was Essential Tremor. Over the past few weeks my symptoms have increased.

Today all my symptoms include tremor with movement, shaky feelings and fasciculations in legs, abdomen, and arms, and tingling sensations in arms and legs. I also have sore and tired muscles in my legs, especially the muscles running from my foot up to the knee. The past couple of days it seems my arms and hands are more shaky than they have been.

I've had a lot of blood work testing and everything is within normal ranges. I had a head and spinal cord MRI and everything was clear.

I have not had any episodes of tripping or dropping things. I do notice that after brief workouts, my leg muscles are really fatigued but I can still function normally.

Dr said he does not believe I have ALS but I am doing the EMG test next month. Would I have experienced some episodes of dropped foot, tripping or dropping things at this point or could it be too soon to show these types of symptoms?

Thank you in advance for any help or thoughts you may have.
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Old 09-22-2018, 04:53 PM #2 (permalink)
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Default Re: Potential ALS Question

Please change your "interest." Essential tremor is not an MND, so you haven't been diagnosed with one.

It's nonsensical to backtrack to what you should have had happen if you had ALS from a history that doesn't suggest it, except to say that you haven't described it. I'm sure the EMG will be reassuring; stop back by when you have a report.

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Old 09-22-2018, 06:19 PM #3 (permalink)
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Default Re: Potential ALS Question

People with ALS don't have episodes of anything. When you have drop foot, you will have it for the rest of your short life. And the muscles just keep adding up till you have nothing you can move. We also do not have sensory symptoms. You have a Dr's opinion that you do not have ALS. Now you are asking strangers on the internet, with no medical background, to diagnose you. Think about that. Get the EMG done if you think it will make you feel better.
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Old 09-23-2018, 04:23 AM #4 (permalink)
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Default Re: Potential ALS Question

I'm sorry if I have labeled or said something incorrectly. I realize you guys are not doctors but many people on this forum have a diagnosis with real life symptoms. You all have some wonderful information to share with others about this disease.

The Dr said he didn't think I had ALS when I first saw him about the tremors. Now that my symptoms have increased, he has not ruled that out. My fasciculations have increased significantly over the past several days. I'm having them all over my body. I'm confused and scared.

I've read from some people that fasciculations all across your body typically means something other than ALS. But I've read from others who have ALS that they did have them all over their body. Should I have other symptoms by now other than this or is it likely too soon to show other signs at this point? That's the question I can't find anyone addressing from what I have read.
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Old 09-23-2018, 04:42 AM #5 (permalink)
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Default Re: Potential ALS Question

I should have also mentioned that in addition to the multiple fasciculations, the muscles in my legs are really tight and sore. My wife is an Occupational Therapist. She massages my leg muscles most evenings and always mentions that my muscles are really tight and have knots in several places.
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Old 09-23-2018, 03:59 PM #6 (permalink)
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Default Re: Potential ALS Question

Muscles in ALS are not sore and tight; they stop working. Again, there's no reason to suspect ALS.

Ask yourself if a friend came to you with this history -- is it ALS that your mind would jump to? I think not. Since your wife is an OT, she can probably suggest some stretches to help the soreness.
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Old 09-23-2018, 06:39 PM #7 (permalink)
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Default Re: Potential ALS Question

Thank you all for your responses. What a wonderful support you have to offer those who have this disease. I am praying the Lord blesses each one of you on your journey. Thank you again.
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Old 10-11-2018, 11:36 PM #8 (permalink)
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Default Re: Potential ALS Question

I had my EMG a couple of weeks ago and it was clear. My muscles are getting weaker though. I feel like my legs are shaky when standing. I was on my knee doing some work yesterday and my leg started shaking because the muscles just couldn’t take it after only 2 minutes on the ground.
My two middle toes on my left foot and my two middle fingers on my right hand are weak. I can tell by walking and typing that they don’t feel right.
I’m feeling twitches from my arms down to my feet. I’m now having abdominal pain and I’m having 4-5 bowel movements most days.
I know the test came back normal but has anyone on this support group experienced something like this in the early stages?
Dr prescribed 100mg of gabapentin to help control the tremor with movement I’ve been experiencing but I cannot tell a difference at all.
Thank you in advance for any insights you have.
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Old 10-12-2018, 12:59 AM #9 (permalink)
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Default Re: Potential ALS Question

I would go back to your PCP and also try some new dietary/modest supplementation strategies empirically, including a B complex and double-checking hydration, electrolytes, sleep, etc.

You could have ET and still be over-reacting to it for physiological reasons. As for the gabapentin, that is a tiny dose and gabapentin is not really an ET response. I would d/c it if not helping, as even a small dose is potentially sedating if you are sensitive.

I would also get an EKG if you haven't, as some of your sx line up with benign but annoying sinus tach, which could call for a drug to slow your rate down.
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Old 10-12-2018, 02:09 AM #10 (permalink)
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Default Re: Potential ALS Question

Jksager, It's evident after numerous tests and a clean EMG... your deep concern
of ALS is very unfounded now.

However, of all the symptoms you have posted... there is one that is really serious.

As you wrote...

" Iím now having abdominal pain and Iím having 4-5 bowel movements most days."

You'd better make that more concerning than ALS before things get uncomfortable
at the end.
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