20 Months in with Dirty EMG --Being Followed--Looking for Conversation/ Opinions

[Erikd74]

Hello,

I am a man in my 30s currently being followed by Columbia's neuromuscular team (specifically their ALS center) one of the most highly respected in the USA. Jinsy Andrews is the md that I currently see.

I have had symptoms for about 20 months now with one EMG showing acute dennervation in my left tibalis anterior and other EMGs showing mild abnormalities. My symptoms seem to now have spread to my left arm and hand. I am petrified. I am scheduled for another EMG with Columbia on June 2nd.

I twitch in my hand throughout the day. In my APB muscle, FDI muscle and ADM hand muscle. All unilaterally on my left side. I have had my NFL levels measured twice and they show within range, although the second blood draw showed an increased level from the first.

The bottom line is...I twitch where I feel weakness and see atrophy. I have had nearly every test in the book. QSM Brain MRI, Spine imaging, Lumbar puncture, etc etc...

I understand that MND is a clinical diagnosis. I see myself worsening and see my dexterity with my left hand worsening.

I also have this hollow almost numb/ deadish feeling in my left hand / arm. I know ALS is not sensory but others have described similar feelings.....is this congruent with MND?

Do others here twitch in multiple hand muscles?
Is 20 months of symptoms put me in the clear?

Scary times
Thanks for listening
- Erik

 

[Erikd74]

Hello,

NFL attached to post

I am a 30 year old male with symptoms for about 18 months. EMGs seem normal but I have all the bad stuff. Unilateral twitching, other symptoms

My NFL just came back very elevated. Can this be anything BUT ALS?

Brain and Spine MRI normal apart from minor disc damage....

 

[Nikki J]

Yes nfl is non specific which is why it is non diagnostic. It can be elevated from a number of conditions plus from recent trauma. You said you have an emg soon so presumably your neurologist will evaluate everything after. Also labcorp just lowered their ranges so it isn’t really clear how the als neurologists will look at the new ranges

 

[Erikd74]

Thank you Nikki. This is extremely alarming as my last NFL test was within normal range. My symptoms seem to be getting worse.

I hope that it is not indeed MND

 

[Nikki J]

Understandably. Maybe this will help A friend of mine- a FALS carrier- recently had a similarly elevated nfl for their age range. Their subsequent emg was ok though

You are in good hands with dr Andrews