Going through diagnosis... I need people to talk to...

[lgelb]

Yes, I understand Stuart's talking about reinnervation in part, Kim, but what is happening in terms of acute and/or chronic denervation isn't clear. Moreover, no reinnervation at all would signal something other than ALS at this point.

 

[StuartEE]

Yes, I understand Stuart's talking about reinnervation in part, Kim, but what is happening in terms of acute and/or chronic denervation isn't clear. Moreover, no reinnervation at all would signal something other than ALS at this point.

Are you able to explain that a little?

I thought denervations are the nerves dying and reinnervations is the body trying to work around/fix the dead nerves.

I though no reinnervations meant als/mnd because as the nerves died there's no attempt by the body to try and fix.

I have emailed the person who did the emg asking for a copy of the data/report.

 

[Nikki J]

Your second sentence is correct. The third is not. An ALS emg shows denervation and reinnervation because it is an ongoing process that the body tries desperately to repair however unsuccessfully

 

[StuartEE]

I have added the document which was sent to my Neurologist. It looks different to the other ones which I have seen on here.

 

[Nikki J]

there is nothing on the emg except the fasciculation potentials. In an als emg I would expect much much more. There is also no comment about the nature of the fasciculation potentials. I have read and been told there are some are benign others that are more worrying.

I am glad you are going to an mnd center because it does seem that there is considerable room for doubt here

 

[StuartEE]

there is nothing on the emg except the fasciculation potentials. In an als emg I would expect much much more. There is also no comment about the nature of the fasciculation potentials. I have read and been told there are some not are benign others that are more worrying.

I am glad you are going to an mnd center because it does seem that there is considerable room for doubt here

That is how I have read it. The EMG basically said I have muscle twitches.
As the conclusion says

"The only abnormality noted in the EMG examination is the presence of fasciculations in distal and proximal limb muscles and in cranial innervated muscles. The nerve conduction parameters (including F-waves) are completely normal...."

 

[rmt]

I'm very confused that the neurologist would suggest MND with a non-ALS EMG, no clinical weakness and only you thinking your voice is different. Am I missing some clinical symptoms that the neurologist has noted?

 

[StuartEE]

He has noted atrophy in my left shoulder and my left leg, however no clinical weakness.
I have days when my arm and leg feel a bit wobbly but then have days when they feel perfectly normal. 2 nights ago my leg was so wobbly it felt like it could give way at any moment, but the next morning, it was perfectly find all day. With my arm it feels a little floppy at times but I have no problem opening jars and bottles etc.

I do sound hoarse very quite easily and talking seems to take more effort. However I find the more I talk the the longer I can sound normal.
I also feel like my lips and tongue aren't working quick enough with certain combinations of sounds and syllables. For example saying something like "At the end of the day" would come out as a slur. But again I find the more I talk the fewer times I end up slurring phrases.

My swallowing has changed and I struggle to swallow small single items. I haven't really choked and the odd time I've had to swallow something on a 2nd attempt. My voice and swallowing changes have come on quite quickly, Id stay started just over 2 months now.

The neurologist has done tests in the office. I had "slight sustained ankle clonus". I dont think I had a babinski reflex or a hoffmann's sign. Blood tests show slightly elevated CK levels.

He told me the MRI was clear, but the letter to my doctor said there was very slight high level a certain tract. I cant remember the exact name.

And then there's the EMG result.

 

[rmt]

So you have no clinical weakness and a non-ALS like EMG. And your symptoms come and go. I'm not seeing how ALS is even being mentioned, except that you are bringing it up to them. I would guess that if you never mentioned ALS to them, they would not be referring you to an MND specialist. I'm worried that you are the one directing the testing, and not the doctors.

 

[Bestfriends14]

Over 7 years with no symptoms, yet you continue to worry, even though everything points away from ALS. Gosh, that is such a sad waste of a life.

 

[StuartEE]

I have never mentioned MND to any doctor or neurologist.

The Neurologist mentioned it to me. he said with the symptoms i described and the tests he's done, it cant be ruled out. The MRI was to check for cervical spondylosis or MS but it was clear.

The Neurologist said everything else he can test ruled out and with my symptoms he's referring me to the MND clinic, who are best placed to confirm or investigate.

Please believe me, this hasn't been on my mind for 6-7 years. I only went to the doctors a couple of months ago after I very suddenly got twitches over most of my body. It was then when the doctor said my left leg has atrophy. It was only when I went to my neurologist he pointed out my left arm has atrophy.

 

[lgelb]

I understand how it's on your mind since they said "it can't be ruled out," but be reassured that the totality of what you have presented, even with that proviso, keeps the odds of "not" greatly in your favor.

 

[rmt]

Stuart, you have posts here from 2016 and 2017 where you thought you were about to be diagnosed with MND, only to be told you were fine. So yes, this has been on your mind for 6-7 years. And your symptoms sound very similar to the symptoms in 2016 and 2017. Read your posts from back then and see if you see any similarities to how you felt then.

 

[Clearwater AL]

Stuart, being this has gone on for three pages I believe until you receive
a confirmed diagnosis of whatever… there’ nothing more to post.

Ok, we have to go by that you said the Neurologist said you have atrophy
in your left leg and left arm. Not saying you’re misquoting but atrophy
can be caused by several other things.

One could read all your posts going back to 2016 and 2017 and recently
it would seem that you are almost pursuing ALS for some reason. You may
say no but appearance is appearance… over 2017 to 2023.

Until you have been processed at the MND clinic you’re scheduled for…
not much more can be posted or replied.

I hope your appointment at the MND clinic will give you the news that
will let you go from the anxiety of ALS.

 

[KimT]

Stuart,

Unless there is additional information, besides the EMG, I can't see how the doctor would even mention MND in his summary. Nothing in that EMG suggests lower motor neuron pathology unless the doctor saw something else and included it in his thinking. It would be the first time I've seen only fasciculations on an EMG that ended up being ALS.

If you had all upper motor neuron findings, PLS would have to be ruled out but your ability to walk for that length of time gives me the impression you don't have spasticity.

You already knew you were having fasciculations and they have been with you for a long time so, if it were MND, I would think your EMG would show denervation, reduced recruitment, positive sharp waves, and fibrillations. It doesn't.

I've had a bunch of EMGs for training and research purposes at Mayo Clinic and my very first diagnostic one was way back in 2014. It showed active and chronic changes in multiple muscles tested. As I progressed, recruitment was reduced in all muscles tested and more muscles showed changes.

Is it possible that your doctor already shared this EMG with the neuromuscular doc? Because, I'd be surprised if a neuromuscular doctor said ALS is on the table unless there is a lot more going on with your clinical exam and, even then, the EMG doesn't support a diagnosis.

I know this is scary and maddening and I hope you can get answers.

Just for the record, my ALS started with cramps and fasciculations in my left foot. I ignored it until some other issues popped up (six months.). That's when I had my first EMG and it was bad.