Advice on possible ALS - have read "read this first thread".

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Mike12345

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Thank you Soo much laurie.

Ok great, I as struggling to find out online what that meant, so thanks for clearing that one up for me.

I haven't heard of "interernist" before, we might have a different word for it down here. But yes been assessed by 2 different general practioners from start to now (almost fortnightly), seen a rheumatologist as well, but they all said the neurological path is the one to follow. Done alot of blood work, MRIs, hair toxicity testing, stool testing, urine etc etc. Getting nothing. The only thing I had was high B6, but nuero said although it effects nerves, wouldn't create atrophy.

And in terms of my atrophy. It definately had a couple of hot spots where it started first (where the fasics were most noticeable) sole of left foot, right calf, left thenar muscle. Now yes all widespread but mostly left sided. (3 months since onset)

Thanks Soo much again for your time. And sorry this response was a bit long winded
 

Nikki J

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an internist in the US is someone who after medical school does their residency specializing in the care of adult medical issues ( 3-5 years usually followed often by a certification exam). They almost always go on to function as primary care providers. Family practitioners cover the whole range of ages and some even do obstetrics and deliveries. They are also primary care providers. I think the reason an internist was mentioned is they have more in depth education/ experience with adult medical issues than a family practitioner due to their narrower focus.
 

Mike12345

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Oh ok, yep I get it.
Thanks Nikki 🙂
 

Mike12345

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Hi all,
Just checking back after my latest EMG. I got hold of my one from January the latest one is still to come.
Possible thoughts on the below? I'm not sure if what exactly I'm looking at is of concern.
There are issues in lots of muscles.
I continue to have extensive and relentless muscle atrophy (confirmed by neurologist) and weakness (not able to be confirmed in assessment).
I've been told that at this stage it doesn't appear to be ALS, however they cannot rule it out or give me any alternative diagnosis, or separate path to chase a solution.
I asked if what I had was treatable and was told no.
Told to come back in a month to assess changes.
Thanks for your time, very much appreciated
 

Mike12345

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EMG attached.
 

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Hi Mike
there should be a conclusion summary in writing at the end - what does that say?
Looks like a very normal and clean EMG - not a thing to worry about in terms of ALS.
Doctors always cover themselves by saying 'they can't rule it out'. Congratulations - since you have no clinical weakness you are truly best getting on with your life.
At present with the pandemic, probably just try to look after yourself, exercise, rest, eat well, then if you are still concerned once the health system is not so full of life threatening issues, go and see your doctor again.
 

Mike12345

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Thanks for your message.
I suppose the fasiculations and muscles wastage is just getting me down a bit.

There was a blurb at the bottom, I only have the one page on me atm.

"EMG showed chronic neorgenic changes int the Left &right FDI muscles as well as some large amplitude/hypertrophic MUPs in well exercised muscles. There were occasional fasiculations in the calves and left sole but no associated active denervation not chronic reinnervation changes. Mup recruitment was normal."

However previously my EMG had reduced recruitment in several muscles.

I do here you advice that this is a good EMG. All the numbers just have me worried for my follow-up.

Stay safe !
Michael
 

Nikki J

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Please post your recent emg when you get it. especially with lots of atrophy that the doctors have confirmed your emg should really show if it were ALS. Did they tell you that the recent one was significantly different? Do you have any upper motor signs?

you said no clinical weakness but somewhere you said unable to stand on the toes of one foot? Did they see and note that?

it must have been hard to hear it wasn’t treatable. I guess I would say of course it isn’t if they don’t know what it is!

you said all the numbers have you worried. What numbers?

were you told things it definitely is not? MSA for example?
 

Mike12345

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Hi Nikki,

I am trying to get a copy of the latest one, but as it was done in hospital I wasnt able to get a copy yet. They said it appeared similar. It sounded noisier (yes im a professional listener now 😛).

Sorry, I didn't mean numbers I meant all the +/- and all the highlighted abnormalities seemed like alot.

And correct, definately hard to hear it's not treatable, and yet not given any clear diagnosis either. I found this a bit strange as well, unless the neuro had an inkling its the start of something bad.

In terms of ruling stuff out, no, nothing really was. The discussion was basically around different motor nueron diseases and how I don't not currently meet the criteria for a diagnosis yet. THANKFULLY!

I was hoping it would be a more definitive "you will not ever meet the criteria"... And the word "yet" stuck. Maybe innocent, I don't know.

Went away feeling even more in limbo land then ever.

Again, thanks for your time with this.
 

Mike12345

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And, with the weakness, they noted my calf raise wasn't as strong on one side yes. And at this stage no signs at all of any upper motor neuron abnormalities.

They did video my tongue for a few minutes as it quivers and twitches bad. But after the video no real mention of it.
 

Nikki J

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There is a volume button on emg machines. Really. And you really really can’t evaluate noise. So many things impact it that have nothing to do with pathology. Unless you are a neurophysiologist don’t even try.

as Tillie said doctors are generally adverse to saying never,
 

Mike12345

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Yes true true. Just wishfully hoping to hear Never!

And of course I have no idea at all what any of the sounds mean at all.

Just concerned that I wasn't really given any legitimate alternatives, or any other suggested tests to investigate. I was pushing for a lumbar puncture and biopsy, but they were in preference of me going away and noting progression.
 
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