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Stacie

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Feb 1, 2017
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Learn about ALS
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State
LA
City
Shreveport
Hi there 😊

Thank you so much for being there.

I have been experiencing extremity weakness (arms/legs) and had an EMG done.

It came back with:
Absent F wave fibular
R lumbar radiculopathy with active denervation
Left probable cervical radiculopathy with chronic active denervation
Left lumbar radiculopathy with active denervation

But the frightening thing is, my MRI of C-spine and L-spine are clear. No pathology of spine. So there is no injury reason for the denervation.

I'm terrified of ALS. It's the only thing that comes up when you search denervatuin. Are there any other issues or diseases that cause this? MS? CIDP?

Does this sound like ALS? I am having anxiety and am terrified. I know it is something neurological but I'm hoping it is at least something treatable.

I am so sorry. I hope this doesn't sound insensitive. I don't mean it to be.

I have also been having issues with occasional nystagmus, rare fasiculations in arms but it seems mostly when tired, my arms almost feel internally shaky? No tremor. Like I worked out to hard. Legs feel weak in the thigh muscle. Kinda foot drop and trip or shuffle a bit.

Thank you for any information. It means more than I can ever express to you 💜
 
Hi Stacie,

ALS does not typically appear in arms and legs all at once. What did your Doctor say about the EMG? Have you had any bloodwork?
 
Thank you so much for replying.

Yes she did. No results yet. My orthopedic doctor actually ordered the EMG-NCV. He was the one who advised that it is not orthopedic in nature since there is no spine pathology. He said it was neurological.

I then drove the report over to my neurologist and dropped them off today. I'm hoping to hear back from her tomorrow. She had not seen the EMG reports during our last appointment together. During that appointment I verbalized her some of the things the EMG doctor said, like axonal loss and she stated that we may do a nerve biopsy. I'm hoping tomorrow I will get a call and we can start doing additional testing.

I'm just really scared because nothing else comes up under denervation. What else could this be? Obviously I have a neurological issue going on. I understand and except that my results are abnormal. I understand and except that I sometimes are real. I'm just hoping there are other disease processes that can cause this that we can explore

I can't stop crying
 
Stacie,

Without having your EMG report, I can't list out the differentials (other things it could be), but I would be certain from what you have said so far that there are some. If nothing else, there are multiple spine problems that can be missed on MRI. Radiculopathy is a pattern that relates to the spine and possibly peripheral nerves, not ALS. Not knowing if axonal loss was appreciated in the NCV and/or EMG, we don't know much of anything about motor unit size/shape, recruitment and spontaneous activity as yet, which are key.

So there is good reason to hope for something else -- and crying will not help either way -- easier said than done, I know. I hope you'll have more information soon.

Best,
Laurie
 
I would say take a deep breath and let your neuro sort this out. As Lauri said, there are other diagnoses to pursue. I know the waiting is wretched. Do keep asking questions of your Doctors, be assertive in getting information.

Keep us posted, you are in my thoughts.
 
Re: Abnormal EMG NCV Denervation. Terrified

Thank you so much for your reply. I'm trying to stay calm and trust my neuro. 😳

. She is going to try to get me in next week or the week after. I'm not sure if my anxiety can handle two weeks of not knowing. She said her first step is to get the blood work back and then to do another EMG and NCV. The last one was performed by a different doctor.

I was very honest with her nurse when I called today to check for lab results and verbalized to her that I was having anxiety, because when I googled active chronic denervation the only thing that comes up is ALS. The nurse came back and told me they take deep breath's that there are other things that can cause denervation that are not as scary as ALS.

I tried to talk to my mom about it but she is a nurse assistant. She listened for maybe two minutes and then talk to me for 45 minutes about her and my dad. And then called my sister because I just wanted a safe place to say that I was scared. And my sister of course lectured me on not putting the cart before the horse. I just want to have some hope and feel reassurance. I don't want to be dismissed .... I understand that I cannot assume the worst. But just a soft place. Maybe some empathy that I'm scared would've been really nice. I think it would've gone a long way and calming me down

Anyway the reason I share that story with you is because it means a lot to me that the people on here take their time. Your precious time and gift it to strangers to help us. It means so much to me personally and I just wanted to make sure I said thank you

In your opinion, did my findings seem like something to be scared of? Or are there other reasons for the denervation without any spinal injury in your opinion, did my findings seem like something to be scared of? Or are there other reasons for the denervation without any spinal injury. ? I know you're not a doctor. And I don't want my anxiety to get the best of me. I think I just want some hope right now.

I did good today. And went to lunch with a friend. joked around. Tried to go for a walk but my legs turn to cement. I hate that feeling. Now I'm alone on my couch and that's when my brain gets the best of me.... I think for a few hours this morning I had a pity party for myself. I think I might let myself feel bad tonight, and then I need to pick up my bootstraps and put stress on hold until next week and hope that I get into see her next week
 
I would be concerned to find out what's happening, but you fretting on the unknown is just fretting. It's normal to be scared, and if it helps, please remember ALS is rare. Yes, like the nurse said there can be other reasons.

I know people in your life can have a hard time being empathetic with your fear. It is hard to be scared, and I understand feeling dismissed. The people in your life are sometimes scared themselves, sometimes preoccupied with their own problems, and sometimes just SO convinced you are fine that your fear just annoys them. Particularly when you fear a disease so rare that people say things like "So, is that the same as Lou Gehrig's?"

I know it's hard, but try to breath, and realize this really can turn out okay. It is NOT sure ALS, other possibilities exist for definitely. There was someone who use to post here who had a tagline "It's only ALS when it can't be anything else". Well, it can still be something else.

Get some rest and have a better night.
 
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