What Do You Make of This?

[hotcoffee]

July 2017 - First time I ever noticed my muscles twitching. I Googled...and I ended up spiraling into an obsession about ALS. Had an emg, some scant findings...Doc said 99.9% not ALS.

August 2017 - Moved care to MGH in Boston, had an unremarkable clinicial exam, neuro not suspicious of ALS

January 2018 - 6 month followup, EMG done by Dr. William David. Scant fasics, said I'm unremarkable, study normal. No evidence of disease.

January 2018 - July 2022 - Ongoing fasics here and there, but was had gotten past this mentally

Late July 2022 - Started having diffuse back pain in morning (10 year old temperpedic, prob time to get a new mattress). Subsides after a few days but then one day I wake up with significant pain on left side of neck, shoulder, and upper trapezius left side

Late July 2022 - This goes on for a week and half, see chiro and deep tissue massage person...relives symptoms for about 24 hours. Pain radiates from upper left trapezius to shoulder occasionally down triceps to forearms and fingers.

August 3rd 2022 - Today when trying to do "kickback rows" with my left arm and overhead triceps raises i cannot do them. If I stretch and ice and rest I can squeak out a few at a much lighter weight than my right.

Overhead press seems fine, grip is fine, bicep curls fine, but I fail on those tests where your arm is at a 90 degree angle and you try to push back but the examiner can easily push my arm back in (I've learned this is relevant to c7 nerve issues, tricep strength).

Arm also feels heavy when laying down and pushing up or reaching across chest.

Also fail the test where palm is facing ceiling and examiner pushes up from under arm, I cannot provide resistance.

Working my way through the system to get to some PT and an MRI maybe emg, possibly a neurosurgeon if it's a cervical radiculopathy or pinched nerve.

But now I'm back in 2017 because I still have fasics (including in those areas) and now I have clear weakness.

 

[Nikki J]

You didn't have ALS in 2018 based on your exam followed by an emg. For those who don’t know him Dr David is the emg chief at Mass General and an ALs specialist in the clinic too.

whatever is causing the pain is most likely causing the weakness you now notice. Work with your real doctor rather than a chiro and let us know what the diagnosis is. I am betting it isn’t ALS

 

[hotcoffee]

Will do, going in for cervical MRI tomorrow. Thank you.

 

[affected]

Just like it wasn't ALS then, you won't convince us you have it now.
Please ask for help dealing with this while you get a clear diagnosis of what is going on.
Imagine if you had lived the last 5 years without trying to prove you are terminally ill?
You don't get a single day back, so please, let it go and let your doctors tell you what is what.

 

[hotcoffee]

Great points affected, thank you. I did manage to put it out of my mind after the emg despite ongoing fasics.

The weakness just totally caught me off guard as I’ve never had that before.

 

[hotcoffee]

Hi mods please close this thread. After speaking with my pcp and neurologist the likelihood of this being a motor neuron disease seems to be exceedingly small

Given the emg in 2018 and the clean clinical in Jan 2019 this would have had to have developed within a small window of time + how consistent my symptoms are with a c7 radiculopathy + how I can reproduce the fasics and sensory symptoms based on head position, parathesia of index finger, that the pain has been ongoing for years in this area (repetitive), location of the isolated weakness (tricep) relative the the nerve root….I would agree.

They didn’t think an mri was really needed right now without going through pt first but I’m having that tomorrow.

I’m sorry to have bothered you without speaking to docs first.