My hubby just was told he might have ALS Please help so scared

Gizzmo

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Hi Iam so new to all of is. It just seems so over whelming I don't know what to do or where to start. My husband who just turned 66 is having test done to see if he has ALS . January 2022 he went in to the doctor for his some hand shaking but only when he would use them. The Neurologist said Essential tremors after 5 months of pills that weren't working he stopped the. In those 3 months of not going back to the doctor his arms biceps and shoulder muscles got very weak. He lost all the muscle in his shoulder girdle to the point of seeing his bones. Now its hard for him to use them and sometime he cant at all. After he rest them he is better. Lots of test were done EMG, Mri's all are good . Brain Mri is good his breathing test are good his swallowing test was good. Went to Froedert in Milwaukee and all the blood test are good. Waiting on CT scan of his chest abdomen and pelvis Please help me so scared Thanks for any help and answers
 

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Sorry you are going through this.
Can you maybe post his EMG and the summary?

Essential tremors are not part of ALS, and a clean EMG makes me wonder how it could be ALS, but maybe the EMG was done 9 months ago?

Is a neuromuscular specialist doing a new EMG, as I presume that is the test you mean to see if has ALS?
 

Gizzmo

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Hi Thanks for any help you can give me. His EMG test was Sept 8 2022. Here are the test results not sure what this all means. The ALS doctor at Froedtert said his case is complicated because he doesn't seem to have the right symptoms. He was good at Thanksgiving time last year a little weak but not like this. Here are his results not sure what you like to see. I dont even know where to start with all this. He has always been so healthy. Scared and so new at all this again thans you for your help. If you would like to see anything else I will get them.

Impression​

This is an abnormal EMG and nerve conduction study of the upper extremities bilaterally and right lower extremity. It shows electrophysiologic evidence which is suggestive of a:

1. Diffuse widespread denervation changes involving both upper extremities, less so in the right lower extremity and the paraspinal muscles including the thoracic region. These findings in the absence of other abnormalities on nerve conduction studies (except for the isolated mild changes in the right superficial peroneal sensory nerve action potential) is very suggestive of a motor neuron disease/motor neuropathy.
2. Superimposed bilateral median neuropathy at the wrist (carpal tunnel syndrome).
3. Isolated abnormality in the sensory nerve conduction studies in the right superficial peroneal nerve which in the absence of any other abnormalities is of unclear significance. This in isolation is not enough to be considered as a factor which is enough to make the electrophysiologic suspicion of a motor neuron disease unlikely.

Clinical correlation is required.

Narrative​

This is an EMG and nerve conduction study done on the both upper and right lower extremity to investigate a 65 year old male with muscle atrophy and weakness mainly in the upper extremities. The EMG was scheduled for the upper extremities but based on the findings during the EMG, the right lower extremity was added for testing.

The right sural sensory nerve action potential had normal distal latency and normal amplitude.
The right superficial peroneal sensory nerve action potential had a prolonged distal latency with reduced amplitude.
Both median sensory nerve action potentials had a prolonged distal latency with a borderline amplitude on the right and normal amplitude on the left.
Both ulnar sensory nerve action potentials were done with digit 5 stimulation and had normal conduction velocity and normal amplitude.
The right radial sensory nerve action potential had normal distal latency with normal amplitude.

The right tibial and right peroneal compound muscle action potentials had normal distal latency with normal amplitude and normal conduction velocity.
Both median compound muscle action potential had a prolonged distal latency with a reduced amplitude on the right and normal amplitude on the left with normal conduction velocity bilaterally.
Both ulnar compound muscle action potentials had normal distal latency with normal amplitude and normal conduction velocity.

The F-wave latencies of the left median nerve was borderline prolonged.
The F-wave latencies of the right median and both ulnar nerves were normal.
The F-wave latencies of the right peroneal and right tibial nerves were normal.

Needle EMG of selected muscles in both upper extremity and right lower extremity showed diffuse denervation changes acute and chronic predominantly in the upper extremities and less so in the right lower extremity.
Needle EMG of the right cervical paraspinal muscles C4-T1 showed denervation changes in multiple levels.
Needle EMG of the left cervical paraspinal muscles C4-T1 was normal.
Needle EMG of the right lumbosacral paraspinal muscles showed diffuse denervation changes.
Needle EMG of the right midthoracic paraspinal muscles showed denervation changes.
 

Nikki J

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Thanks for sharing. this looks from your summary like an emg suspicious for ALS as it says. The emg is of course just a test albeit an important one. The clinical picture is another part as is ruling out other things I think we were confused as you initially wrote emgs, mris are good. The emg isn’t good. He has atrophy and weakness which are consistent with ALS but apparently the doctor sees other things that are making them look hard at other things.
I am really sorry Please let us know what happens. Right now hard as it is you need to let the tests happen
 

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Thank you so much for posting this. As Nikki says, we were a little confused.
I hope the specialist can give you some clear idea of what else they feel could be going on, as I can understand how concerned you are.
Sadly, as Nikki says, there are some more tests and exams that need to be done to help your specialist be very thorough before giving the diagnosis. I hope it can be done with as much speed as possible.
 

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I hope there is another explanation. The CTs are to see if he might have cancer or another condition causing the problems with his movement.

It would still be helpful if you could take a photo or scan the EMG table of findings, the part with rows and columns.

It is true that tremors are not normally associated with ALS onset, but these presented before the weakness and atrophy, and, as Nikki notes, it's a serious EMG report.

From your description of the dramatic loss of bulk near the shoulder, he has lost a lot of muscle around the shoulder joint, muscle that normally keeps the joint in place. He could have a form of ALS called flail arm, which would make his shoulders at high risk for permanent subluxation (a kind of dislocation). There are also other conditions, sort of similar, that can cause a flail arm syndrome.

So I would make sure that he does not lift his arms over his shoulders, that he doesn't do any exercise or movements that strain or pull the shoulder, and that his elbows are supported when he is sitting or lying down, or exercising. Once he is diagnosed, a physical therapist with neuromuscular expertise can show him the best way to exercise as things progress.

Let us know how the CTs go.

Best,
Laurie
 

EricInLA

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As others have suggested, at this point it is very important that he get a clinical exam from a neurologist who specializes in motor neuron disease - a "neuromuscular" specialist. That's what the EMG report means when it says "clinical correlation is required". The key language of the report is "very suggestive of a motor neuron disease/motor neuropathy". That last part, "motor neuropathy" is a slightly different category of diseases such as Multifocal Motor Neuropathy. Those are also very serious diseases but not quite as dire of a prognosis, and they have a good treatment for that. I was hoping my situation would go in that direction but it didn't turn out that way for me :( In a clinical exam, the neurologist can assess whether there are any 'upper motor neuron' symptoms. If not, the motor neuropathy diagnosis may be in play.
 

Gizzmo

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I want to say a big Thank You for all your help and information its such a scary time. We have Married for 48 years so hard to see him so discouraged and depressed. He is just so tired I try to be upbeat and positive for him. His scans are next week Wednesday it takes so long for everything. It is the not knowing that is making me so stressed and sick to my stomach .
 

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Yep, I hear you! Not having answers and having to wait to get them is sooooo difficult. I went through many sleepless nights (and a lot of Ativan) when I was in diagnostic limbo, so I totally empathize with you. Eventually, even though my diagnosis was the worst one, my mental state settled down. It often happens that way.

I would recommend making the neuromuscular appointment now at a neuromuscular/ALS center because they can be difficult to get and can be booked way out. The sooner you make the appt, the less time of not knowing you will have. If you get good news with the scans, you can always cancel your appointment.
 

Gizzmo

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HI I have a what does this test results show? They were all negative but these. Looked them up but just confused me even more. This stress is so hard not having answers. Ct Scans coming this Wed hoping ofr some answers from the doctor Thanks for letting me ask questions trying to stay sane !
P/Q-Type Calcium Channel Ab0.00 nmol/L<=0.02 nmol/L<=0.02 nmol/L
Neuronal (V-G) K+ Channel Ab, Serum0.00 nmol/L<=0.02 nmol/L<=0.02 nmol/L
 

lgelb

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Those relate to some of the less common neuromuscular disorders -- not ALS. They would be trying to rule out non-ALS things that can be mistaken for it.
 

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This forum is to help people who are concerned they have ALS.
You do know we are not doctors here?
This CT is nothing to do with ALS but is looking for internal masses and structural abnormalities.
No one here should comment on this, please discuss the findings with his doctor.
I know you are stressed, but nothing takes the place of discussions on test results with your doctor.
 

Gizzmo

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Sorry wont post here anymore about test results. You can please delete it all
 

Nikki J

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You may certainly post. We know the rule out process is excruciating once you have been told ALS is possible. I imagine you got results from a portal. Portals are good and bad because you see the results as soon as they are available and often before the doctor does So you are left to worry and wonder. Please let us know what the doctor says and what the plan is now
 

Gizzmo

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I do have a question if anyone has had this problem. When my husband gets in the shower using warm water he can't lift his hands to his head. He can hardly hold his towel after. But before he gets in he can use them kinda good but after there no strength at all. But then after 5 minutes later he is better. He is so frustrated with the weakness and the hard time getting his arms and hands do what he wants them to . Thanks again for any help I am thankful for any answers
 
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