ALS ?..or different neuropathy

[memikee]

Hello everyone .
My name is Mike ,and i am 58 years old .
around 8 months ago,i noticed my left leg wasn’t quite as strong as the other … and that’s was about as far as it went in my thoughts .
A few months later ,i noticed i had to keep stopping when i went for a walk - this has continued to today ,though i have to stop walking around every 50 feet or so,as my bad leg almost goes tight,and weak,as if it’s already ran a marathon - i’ll stop walking for a minute,and it raises somewhat ,but will have to stop again very shortly as it never quite goes. away ..
Went to GP ,PAD artery was tested ,all normal
.. bloods done all normal.. MRI of lower spinal
for stenosis/nerve entrapment - all normal .
Booked an urgent neurologist appointment which i have tomorrow.
Past month or so i have noticed my left leg calf
muscle has some atrophy - about half an inch less in diameter then the other leg.. and in the
past few weeks fasciculations have appeared in bad leg, constant ,and all over the calf muscle itself .
I’m writing this with an inquisitive mind,with the hope of any kind of feedback to similar sounding beginnings .
I realise that if now it is ‘presenting ‘ as ALS ,but also many other neuropathies.
I hope my neuro is worth his salt,and that test will begin swiftly.
Many thanks ,and my deepest respect to every single one of you . sincerely mike .

 

[Nikki J]

We would only be guessing. When you see the neurologist ( on a Sunday?) they should examine you and look for atrophy weakness and upper motor neuron signs. If they find these in any combination they will probably order tests. If ALS is on the table until you have an emg the differential will probably be wide.

Do let us know Love Cornwall. My family ( and sadly my fals) are from Pennance

 

[memikee]

Hi Nikki - i’m in Padstow ,and cornwall sure is something else !..
I have a locum neurologist at treliske 9.00 am tomorrow morning ! - think he is there just to get the horrific waiting list down somewhat !..
very difficult situation - i want to know what is happening - but then again do i !?
..forgot to add my knee reflexes nearly knock me out !.. go up like a rocket ,never used to be like that ..
i’m presuming he will hopeful order some Nerve conduction studies and eeg after he sees me.. and again hopefully that won’t be too long - but will certainly get back here and post the results of the meeting ..

 

[Nikki J]

Padstow is truly lovely. Good luck and be sure to review the sticky on getting a diagnosis near the top of this subforum. The more prepared you are the more you will get out of the appointment

 

[memikee]

update -
Had my consultation today - short and sweet ,very nice neurologist ,warm and attentive .
He has arranged urgent Emg and nerve conduction studies booked for a couple of weeks time .
i told him i did have a concern over it being ALS ,he smiled and nodded, and said ‘this is why i am ordering these urgent tests…
feel a bit sick to tell you the truth ,but also know it could
be other types of auto immune issues.
Will keep you posted when i get the results back…

 

[Nikki J]

I am glad he is expediting the testing. Waiting is terribly hard. I am sorry ALS is on the table will hope of course for another answer. It definitely does happen so don’t give up hope. Keep as busy as youcan while waiting

 

[memikee]

just been and had my emg and ncs…. boy they are not nice !! -
at the end of the tests i was told my consultant would
have the report on his desk by tomorrow .
some quick !

 

[Nikki J]

Let us know when you hear. Hoping for the best but will be here for support if not

Good luck

 

[memikee]

hello -
results back in .. very perplexing to me .
normal ncs/normal emg - apart from chronic denervation - which the locum neuro states is most likely due to L5 /S1 radiculopathy - which is concerning ,in the sense that he hasn’t looked at my MRI which shows no nerve entrapment /issues at L5 S1 !..and has dropped me off
his list like a hot brick
so ,here i am now - progressive clinical weakness, atrophy and fasciculations in one leg ,and have been referred to physio ..
i asked for second opinion ,especially as his guess has already been ruled out ..
very much like to hear your thoughts

 

[Nikki J]

Emg and mri do not always correlate so it is indeed possible that it is your spine. Definitely try physio while you wait for a second opinion.

Did you have upper motor neuron signs on exam? Those would be spasticity, hyperreflexia in your weak limb not present on the other side and sustained clonus in that limb?

If you have the actual emg report and wish to share it ( deidentified of course) we could look at the emg table and summary

I realize this is confusing but obviously better than yes clearly mnd

 

[memikee]

in my bad leg ,i have a very brisk knee reflex..nearly takes my teeth out !! - no clonus.
have asked for the table /summary ,not received as yet -

 

[memikee]

Medical literate states that Emg and ncs results can be normal,even though ALS has been confirmed further down the line …at what what point should you ,or should
you not listen to these results !?…

 

[Nikki J]

I don’t know what you are reading. It is true and is noted in our sticky post that people who start with upper motor neuron disease may initially have a normal emg. They are given a preliminary dx of pls but it not uncommonly spreads to lower motor neurons so “becomes” ALS. This is why I asked you about umn findings but hyperreflexia alone would not diagnose you with PLS. Of course everyone with ALS would have had a normal emg before the disease started but that isn’t what you mean

Someone with ALS presenting with weakness and atrophy should really show clearly on emg. It will be helpful for us to see the actual emg report. An ALS EMG shows acute and chronic denervation in a widespread pattern. This is one of the criteria for a diagnosis along with upper motor neuron signs as I described