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Awa5555

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First off, I want to thank you all so much for the invaluable wisdom so many of you have shared here. You have helped so many (including me) through this disorienting process, and I really can’t thank you enough.

This is my first time posting, and I feel like I have nowhere else to turn. My grandpa (who is essentially a father to me) was told at the Mayo Clinic that he is likely in the early stages of ALS (no diagnosis). He has had two EMGs, both abnormal but nonspecific, the last showing unchanged nerve conductive findings from the first EMG except the findings have progressed to the peroneal (fibular) CMAP. The EMG show a “disorder of anterior horn cells or other axons affecting the cervical, thoracic, and lumbosacral segments” which support ALS. He has had widespread fasciculations for six months as well as feelings of weakness (though not the clinical type of weakness explained in the sticky - though the doctor confirmed elements of “weakness” during his exam). After the exam, the doctor told him the likely diagnosis and referred him to an ALS center.

What I don’t understand is why they aren’t ruling out other problems - mainly his spine. A few months prior to the onset of his symptoms (which began as widespread fasciculations), his poor posture became very pronounced. He went to a massage therapist who manipulated his spine so much that it was straight again, then poof, three weeks after the massages he had twitches all over his body. He has had one MRI of his cervical spine, which indicated moderate spinal stenosis, but no other parts of his spine have been examined. They told him that his symptoms couldn’t be related to his spine, because both sides of his body would be affected equally if that were the case, and that’s not what the EMG shows. Plus a PET scan pointed to ALS (which showed mild dementia).

I told my aunt we should get a second opinion, and she scoffed, “And you think anyone’s better than the Mayo Clinic?” I just think there are other things that need to be ruled out before we launch to ALS. Am I wrong in doubting this likely diagnosis, or is this the medical field’s way of preparing you for the worst? Feeling very lost and confused. Thank you so much for any feedback. God bless.
 

Atsugi

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Welcome Awa,
Just a couple notes and then someone else will give more specific comments on the EMG business, I'm sure.


1. Widespread fasciculations: good sign. ALS starts in a specific area, not widespread.
2. Feeling weak: good sign. New onset ALS wouldn't cause "feelings" of weakness.
3. Your post seems based on verbal convo with your aunt. The written report from the doc would be helpful.
4. I agree that second opinions should be de rigeur. But, however, you don't want to start a family feud, if, in fact, papa needs the support of a strong family.
5. This is not the medical field's way of preparing you. A doctor will write down whatever findings are supported by the evidence, and let the chips fall where they may.


Someone will be along shortly, I'm sure, to talk more technically.
 

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Hi Awa,

We always recommend a second opinion, no matter how exalted the center. Physicians are all human and subject to getting stuck on an idea.

That said, it's pretty common to be older and have some spine problems, and also have ALS. So I wouldn't advise your grandpa to get a second opinion with the expectation of reversing the first one, but rather to have the peace of mind going forward that both of you and the rest of your family have the right to.

Best,
Laurie
 
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Awa5555

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Thank you so much for your replies! I will try to get my hands on the report. Apparently the doctor said it had to be ALS because the EMG showed problems with both the upper and lower motor neurons. I’ve combed through as much as I can to determine if anything else can cause problems with both, but am having trouble finding any info on this. They also said the weight loss and loss of muscle mass is a strong link to ALS - but he can still do everything he used to do, although he says it feels more difficult (to lift a case of wine, for example)

I should add that the Mayo Clinic has done so much good for so many, and I don’t mean to discredit them or say anything negative. My grandpa loved his experience so much there he bought a t shirt! I’m just trying to navigate this new territory and help figure out the next steps.

Thank you all so much again for your reassurances and words of wisdom. I am in awe of this community ❤️ Wishing you all the best this holiday
 

Awa5555

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Here’s the EMG report. Thank you so much for any insight. I should add he had some kind of stroke in 2015 that went largely undocumented (he didn’t even know it had happened) and I understand that might affect the EMG report, too? Thank you again for any insight during this confusing time.
“Nerve conduction studies of the right upper and lower limb showed low-amplitude peroneal (fibular) compound motor action potential (CMAP). In comparison to the prior study from August 03, 2018, the peroneal (fibular) CMAP has dropped in
amplitude by approximately half. All other nerve conduction studies performed on today's study
were essentially unchanged. Needle electromyography of the right lower limb, right upper limb, right thoracic paraspinals, and left sternocleidomastoid demonstrated fibrillation and or fasciculation potentials in most muscles examined as well as long duration, high amplitude,
complex motor unit action potentials with frequent instability and reduced recruitment in most
muscles examined.”
 

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I am sorry. Although the summary does not specify the values for eachmuscle that looks like an ALS EMG. As stated above a second opinion is standard but don’t expect a different answer.

Very sorry
 

Awa5555

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Thank you for your reply, Nikki. Should we hold out hope for ALS “mimics?” (Re: the stickies). Really the stickies are keeping me hopeful the bad EMG could mean something else. He hasn’t been checked for many of the other mimics listed. Or maybe I’m holding onto false hope since the EMG must be pretty decisive if you’re that sure. Thanks again for your wisdom.
 

Nikki J

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The things in the sticky ( what it was when it was not ALS) are mostly things that had symptoms but not the EMG. If he has had brain imaging and blood work not sure what else could be on the table.

He is lucky you care so deeply.
 

Awa5555

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He hasn’t been tested for heavy metals or had his B vitamins checked recently - and they were extremely low about a year ago. Thank you again for your wisdom.
 

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I would get a second opinion regardless of what the tests say. Just make sure you have all the records and doctor's notes. Mayo has a portal and all can be downloaded.
 

Awa5555

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Thank you so much, Kim. I’m so worried about the EMG report - I had no idea it was so revealing. It’s so strange he’s had widespread fasiculations with just feelings of weakness for nearly seven months - I’ve been clinging to hope that this must be a good sign.

Would a second opinion at an ALS center be appropriate? Mayo told him to make an appointment at an ALS center to take it from there, but maybe that’s not the place for a second opinion?

Thank you so much for any help. I feel so lost.
 

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If he has a nutritional deficiency, that should be addressed anyway, ALS or not, and may have an underlying cause -- but is not likely to have caused the EMG results you described.

Past heavy metal exposure wouldn't account for steadfastly reduced recruitment, for example, and I am assuming no ongoing occupational exposure as in the cases reported.

Not saying there is nothing else -- I continue to advise a second opinion (at an ALS/neuromuscular center, yes) on general principles, as we all will. Just don't hang your emotional hat on it.

Best,
Laurie
 

KimT

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Yes, I agree with what Laurie posted.

I went to Mayo and Johns Hopkins, then settled for University of Florida for care.
 

Awa5555

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Thank you so much, Laurie and Kim. I am so sorry for the bother, but can anyone tell me what reduced recruitment means? I’ve googled and googled and can’t find an answer. I know it’s bad news if the EMG shows active denervation/reinnervation, but in all my googling I can’t figure out if that’s the hidden meaning behind this EMG report.

Thanks again for your help. I am worried sick and can’t sleep or think about anything else.
 

lgelb

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Where does your grandpa live? We could recommend some centers for the second opinion.

Recruitment is a measure of how well the motor neurons (nerve cells) work together to move a muscle when you decide you want to move it.
 
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