Old 09-14-2018, 11:53 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, 12:18 PM #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,
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Old 09-14-2018, 12:30 PM #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, 01:08 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, 01:10 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, 09:41 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 09-18-2018, 10:38 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 09-18-2018, 10:58 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 09-18-2018, 01:17 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 09-18-2018, 08:42 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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Old 09-24-2018, 05:04 PM #11 (permalink)
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Default Re: Beside ourselves, please read.

My husband called again for the test results and I think they are misunderstanding what it is we were wanting. They did give him the reading report, I'm unsure if this will be of help for advice. It basically said the following:

EMG of left lower extremity

EMG of left lumbar paraspinals, quadriceps, adductor longus, tibiaus anterior, short head biceps femoris, peroneus longus, lateral gastric shows reduced interference pattern of all the muscles tested. There was no evidence of acute denervation.

Conclusion
This pattern of findings is worrisome for a central process as seen with a myelopathy or Motor Neuron Disease.

The Nerve conduction study was normal.

This is the first we have heard about myelopathy coming in to play and we have viewed some of the symptoms, which he does have. They have also changed his chart from ALS to Motor Neuron Disease, I have no idea if that even matters. He is set with a muscle biopsy the first week of October and then estimated 3 weeks for Pathology report.

He seems to be becoming weaker in his left leg. He's unable to lift it or push down, as if to push a gas pedal. There's just no strength there and his foot shakes a lot. He can lift his leg if it's from a bent knee position, which is so baffling. Nothing else seems to be affected or getting weak, just the left leg.

Thank you for your time for reading this.
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Old 10-04-2018, 10:38 AM #12 (permalink)
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Default Re: Beside ourselves, please read.

Sorry to post without biopsy results, he goes in 10/9 for the muscle biopsy itself. This is the only place I know to go to seek any advice, I know you guys can't diagnose, but I was wondering if your experiences have been the same.

He still can't lift his leg up from a laying position or wiggle his toes. Weakness is more pronounced in his left leg and foot. We have discovered he can move his foot from side to side and lift his leg.....if it's an angle and he's on his side (so we are assuming those muscles have not been affected as of yet). It's now progressing up his thigh and into hip area.

Our oldest daughter has Autism and likes to rebound (exercise trampoline), he tried to jump on it playing around with her. He couldn't jump at all he just stood there even though he was trying with all his might. Afterwards his whole lower body began to involuntary shake all over. I could see his legs shaking and moving.
Sometimes after work he's very shaky. He's still trying to work, but it's taking everything out of him and he fears he may have to ask for light duty. He's been in his field for 20 years and has always been able to keep up.

I appreciate you guys letting me post on the forum and answering when you are able to answer. I know each person is different.
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Old 10-04-2018, 12:36 PM #13 (permalink)
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Default Re: Beside ourselves, please read.

While you're waiting for results, keep this in mind:


Without all four limbs being perfectly responsive, he needs to stay off that trampoline. Time to take it easy.
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Old 10-05-2018, 09:50 AM #14 (permalink)
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Default Re: Beside ourselves, please read.

I'm sure this is very scary for you and your family. Keep us updated. I also have an Autistic child who loves to jump, crash, spin, run
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Old 10-06-2018, 12:00 PM #15 (permalink)
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Default Re: Beside ourselves, please read.

Oh no, no more trampoline!! He needs to be very careful. Whatever is going on, he's in danger of falling and injuring himself, and that's never good.

If you described his work field, I missed it, but if it puts him at risk for falling he needs to let his doctor know. Whatever is happening, you don't want him hurting himself or putting anyone else at risk. Hopefully it will be temporary.

I pray that some other explanation is found. A visit to an ALS specialist is appropriate--either to confirm or rule ALS out.

You do not need to apologize. We all hope that you do not become a regular member of our group, but if you do, we will be here for you.

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