Old 09-14-2018, 10:53 AM #1 (permalink)
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Default Beside ourselves, please read.

Hi All,
I was wondering if you could give me your opinion on my husband. For about a year he was having issues with his back. He tried physical therapy and epidurals. Nothing seemed to help. Fast forward to a couple of months ago...we both started noticing him limping. He noticed that his left leg was getting progressively weaker. This concerned him and back to the bone and joint doctors he went. After CT, EMG (they didn't see anything too concerning), and MRI (to which my husband is a MRI tech), nothing was shown to cause his symptoms (No disc issues or the like). He was referred to a neurologist. This particular neurologist works with my husband and seen him limping in the hallway of the hospital, he had him do some other things and was concerned...he got him an appointment the next day in his office.

So, here's this past Thursday and he has another EMG. The neurologist was very concerned at what it showed. This time the test was done all the way up his back as well. He said that no nerve damage was present at this time. He was also concerned about my husband's reflexes. He prepared us that he thinks my husband has ALS. He sent him in that afternoon for another MRI cervical spine/brain, to rule out MS. It did not show MS. Next step is a muscle biopsy next week and then spinal tap. If nothing found then...the neurologist wants a second opinion at an ALS clinic in our state. He told us to keep an open mind.

Right now his symptoms started presenting itself in his left leg first, then progressed to the right. Now there's muscle cramps in the calf of the right leg (like a Charlie Horse).
Here's the symptoms:
*Began with left foot weakness, going up leg into calf and thigh.
*Unable to dorsiflex foot.
*Can not push against resistance in all major muscles of the left leg.
*Twitching in quad, hamstring, and calf.
*Difficulty walking.
*Right foot becoming a bit weak.

All these symptoms started about three months ago.

We are beside ourselves. He's 39, we've been married 17 years, no family history of ALS, and we have 2 kids under 13. Up until this point he's always been healthy, aside from high blood pressure. He's still working as we speak. I guess the real freak out moment came when he looked at his patient portal and they have him listed as being treated for ALS. Are we in denial? We thought maybe they entered it that way because of our difficult insurance, who kicks back so many tests. Are they thinking the worst and hoping for the best, my husband does this in his field. Could it be something else? Is it possible it's another motor neuron disease? Does he have a shot at it NOT being ALS?

I would appreciate any opinions and sorry this is so long. Thank you to anyone who may read and offer advice.
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Old 09-14-2018, 11:18 AM #2 (permalink)
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Default Re: Beside ourselves, please read.

Hey, Worried, can you post the last EMG report, or preferably both? That would help us comment. We always advise that you acquire and keep copies of all test results anyway. Is this neuro a neuromuscular specialist?

To answer your question, ALS is not normally used as a provisional dx purely to get testing covered.

Best,
Laurie
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Old 09-14-2018, 11:30 AM #3 (permalink)
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Default Re: Beside ourselves, please read.

He tried to get his EMG results from his patient portal, but they are no listed as of yet, sorry. The doctor did tell us that there was no denervation..no nerve damage that he could tell. He said between the EMG results and his reflexes, he was concerned.

He's also a regular neurologist. Is it common for him to already list ALS on my husband's chart for treatment? I know I am probably asking questions that I can't get answers to as of yet, but we are just looking for some type of hope.

Thank you for responding to my post.
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Old 09-14-2018, 12:08 PM #4 (permalink)
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Default Re: Beside ourselves, please read.

Denervation on emg in a certain pattern is what is seen in ALS so I am puzzled that he said that and then said the emg indicated ALS did he possibly say instead the nerve conduction test was normal? It usually is in ALS

Abnormal reflexes are usually a part of the picture in ALS though there is much more to it.

Non neuromuscular neurologists have certainly made ALS diagnoses sometimes they get overturned sometimes they get confirmed going to an ALS clinic next is appropriate. In the meantime getting the emg and the visit note would be very helpful. Posting the emg with the identifying data removed as Laurie says will help us reply.
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Old 09-14-2018, 12:10 PM #5 (permalink)
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Default Re: Beside ourselves, please read.

If there is no denervation on an EMG, there is no ALS. So that is a confusing statement. Post the results when you get them.

I can't answer for this neuro in terms of coding from what you have said, but until there is confirmation from an ALS center, there is certainly hope.
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Old 09-17-2018, 08:41 AM #6 (permalink)
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Default Re: Beside ourselves, please read.

My husband talked to the neurologist and he told us the following about his EMG results:

*Difficulty activating muscles.
*No active denervation.
*Reduced recruitment of motor units.

I hope this may be of some help for my questions. I appreciate all you guys input, thank you.
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Old Yesterday, 09:38 AM #7 (permalink)
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Default Re: Beside ourselves, please read.

I was also wondering about the muscle biopsy coming up. If there's no damage indicated or fibers found(I may be misunderstanding the exact term they are looking for), could that be a good sign?
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Old Yesterday, 09:58 AM #8 (permalink)
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Default Re: Beside ourselves, please read.

People who have ALS clearly on emg don’t generally have muscle biopsies. I have seen a couple of reports of changes seen that support ALS but not sure how often this happens

The muscle biopsy is really looking for other things and given the emg findings that do not have denervation seems logical. An ALS diagnosis at this point seems very premature

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Old Yesterday, 12:17 PM #9 (permalink)
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Default Re: Beside ourselves, please read.

I encourage you to get the full report, as is your right, as mentioned in the "Getting a Diagnosis" sticky. It's difficult to parse what you're reporting. But as Nikki says, if there is no active denervation and they are doing a muscle bx, there are many other possibilities.
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Old Yesterday, 07:42 PM #10 (permalink)
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Default Re: Beside ourselves, please read.

I just wanted to thank you guys. To take the time to read my posts and give me your opinion, I can't give enough thanks. Your words have been very encouraging.

I hope we find answers soon, as of now he can't lift his left leg at all, when he's laying down. When we do strength tests...his left foot shakes and pushing down (like a gas pedal), is extremely weak. The not being able to lift his leg has him most worried.
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