a worried Guest to this forum...

worriedMan73

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A warm hello from the UK

I've read all the guidance on posting here, and indeed its such a privilege this space has been setup for people with questions and worries as well as people who are here because they have to be - i'll donate to its upkeep without hesitation.

A recent EMG and googling brought me here, as I suspect many others, and while I await an appointment for where to go next, I cannot help but worry about what it might mean.

Start of 2022 - I'd been suffering from tremors - because of their sudden onset on both sides it was first thought of as a stroke - but then diagnosed as essential, but then changed to "a strange type" (Neuro words not mine!) of physiological tremor, especially in the upper limbs - basically if i lean against anything that limb shakes, not like pulling a weight shake, like a proper shake from just the slightest of effort - and from that, plus a change in reflexes, and weakened grip, an EMG was recommended -
In the long wait until then, i developed what i call slowness in my left arm and a dull sensation as well as stiffness in almost any muscle used.
Physical exercise became a thing of the past pretty quickly and so I lost most of what drove me, the social aspect, the gadgets, everything became insignificant until I could find out what it was.
As well as the tremors I started to to react to things I see or dream, like if someone kicks a ball on TV, i want to do it, or i daydream about something , my hand might react to it as if it was real.
6 weeks ago I started with fasciculations in the calves and sides of my hands - with my hand "pads" looking wrinkly and thin.
2 weeks ago the EMG was done and I've just got a copy - having no idea what its meaning, but searching the terminology brought up ALS
so now i'm totally scared and panicked about it as I'm sure many reading this will either know or have seen on this forum.
The EMG conclusion stated:

"chronic denervation seen in his limb muscles cannot be altogether ignored especially, if there is no accountable pathology on MRI of his lumbosacral and cervical spine"

I have already had brain, cervical and thoracic MRI's showing nothing.
I can but wait for the Neurology report.
 

lgelb

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Can you post the tables of data on the EMG and the full report with identifying details blacked out?
 

worriedMan73

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I've created a image from the document, i've removed the personal/pre-amble/history details.
I hope it is readable. I fainted around half way through the right arm test, i was not well anyway and it was hottest day on record and the needle was jabbed in really hard. I must admit these past few hours since posting, i've been pretty anxious and searching google a lot.

Untitled.png
 

lgelb

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I'm not seeing ALS in this. As you will have read, widespread active and chronic denervation are necessary, along with specific abnormalities in motor neuron function, and that's not what this shows, though the report is rather vague. But as you can see, the conclusion hardly reads, "smoking gun for ALS." In addition, the NCS comment as regards small CMAPs and mild chronic denervation makes me think of some troublesome but not serious condition. Some of these can manifest in young adulthood. I am guessing you are not yet middle-aged.

As well, your picture sounds more systemic than neurological. Did your GP really work you up for illness generally, with labs, ECG, and such? A "prolonged fainting episode" even in heat seems rather out of the ordinary. I would be looking at diet, electrolytes, hydration, stretching in the morning, and all the other boring but important things.

I understand waiting is difficult, but I expect your report to be reassuring as regards ALS. Don't get lost in Google's rabbit hole.
 

worriedMan73

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My goodness. Thank you for your time looking this over. Much appreciated. I'm 49 , so long time since being a youngster I'm afraid. Lol.

Gp did full blood workup, but nothing but all green results.

I've also had vit E and magnesium all good.
I've paid for a full auto immune panel to be done next week.

Thank you once again.
 

worriedMan73

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After doing some more research via google on values for EMG - i'm really really worried about that EMG above and the fact that almost every box with values in them seems to be outside green values - i know its been looked at by @lgelb and I appreciate his input - but I'm just not getting past this EMG and the NHS neuro wanting to do it again next month - its got me seriously panicking now....

Facilitations in both calves and twitching (myoclonus?) across most muscle groups continues.
 

Nikki J

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Mr google is not a neurophysiologist and I doubt you are. the whole picture matters when you are looking at an emg and you have entirely “ green boxes” as you call them in the left hand columns those are the ones that denote acute denervation and you do not show any at all. Acute denervation is one of the key findings in ALS EMGs can show many things and not all abnormalities are significant. Please ask your doctor to explain how it relates to your clinical picture. I am surprised your neurologist is rushing to repeat it. Even if they are following something clearly worrisome ( and I am not at all convinced this is the case here) 3-6 months are usual intervals
 

lgelb

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When/how did the neuro decide to repeat the EMG next month? The report only speaks of possibly repeating in the future if the clinical picture changes.

As Nikki says, in the absence of acute denervation, it's hard to worry about ALS. A lot of your physical issues speak to the possibility of hypervigilance/anxiety so seeking help for that constellation cannot but help you feel better.

Again, get off Google and keep living your life.
 

worriedMan73

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Thanks for the reply. The EMG was recommended by a private neuro. Then I finally saw the NHS neuro and showed her the results and she wants to do another one... That's pretty much all she said about it..
 

Nikki J

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Some doctors just want the emg done by themselves or their immediate colleagues I wouldn’t read anything catastrophic into it. It is simply their preference
 

affected

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Time to take all this back to your doctor.
Coming here for advice, receiving it, then googling and throwing your findings back to show our most senior members they are wrong? Well, to me, I humbly submit that just seems a bit off.
Only a doctor can help you, go back, give all your evidence to them and work it through.
All the very best.
 

worriedMan73

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I know your right @affected , I have difficulty in the waiting between consults / tests etc and feel I have to do something - its something I struggled with in the past with a cancer diagnosis - please I never mean to offend or upset anyone and my apologies to those who feel that I have - I can see this is an amazing resource with lots of experience in dealing with this disease.
 

lgelb

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As Nikki notes, there is nothing fraught to read from the notion of another EMG. A complete lack of acute denervation, one of the criteria for diagnosing ALS, is not going to change greatly in a month.

You can lock yourself in the prison of your own imagination, or you can live the life that others here cannot. Seeking help for your tendency to throw away the key is your first step, and far more likely to help your health than Googling unproductively.

Please do not post again until you have a new exam or test to report.
 

worriedMan73

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EMG today - what a difference a good bedside manner makes, he redid some of what was already done, plus finished off the arms and the fingers , with needles and shocks - immediately said at the end when i asked him "so.....mnd?" - "definitely not from what i see here..." - he's going to put a full report to my neuro - nothing else he said about what might be the cause.

my uttermost thanks to the people who took the time to read and post on this topic of mine - and to the rest of this community know that i will not forget the courage i see on here and the true support everyone gives each other. i'll be donating to the charities.

🧡
 

affected

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Fantastic. Remember that if you worry about this again, it still won't be ALS. All the bst.
 
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