Ongoing weakness

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Brad H

New member
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Joined
Aug 20, 2022
Messages
6
Reason
PALS
Diagnosis
10/2022
Country
US
State
VA
City
Madison
Hello all, and a heartfelt thank you for all that you do on this forum. I have been lurking for a few months now as I go through my odyssey. 60 year old male - otherwise very healthy competitive road racer. It started 9 months ago with painless left hand weakness/clumsiness in fingers. Didn't think much about it, Physical Therapist recommended my GP for possible rotator-cuff tear. GP x-rayed and found minor rotator-cuff tear, referred to Orthopedic Spine Surgeon.

After MRIs of C-spine, T-spine, shoulder, brachial plexus and elbow... other than looking like a normal 60 year old (some arthritis and degeneration of discs), found really nothing that would explain hand weakness. Fast forward, progressed to left wrist-drop. Referred to a Hand Surgeon who was convinced that he could do a tendon transfer to recover the wrist action. Had an EMG that was abnormal and Neurologist that performed it reported it as C-7 radiculopathy.

Still no pain anywhere but twitching started in left forearm/wrist. Fast forward, left hand and wrist are completely flaccid - I cannot make them work. Went back to Hand Surgeon to schedule surgery and he stated that he would not perform it because he couldn't find a 'healthy tendon' to transfer to. GP did full blood workup and all came back normal.

So, here we are at 9 months;
GP, Hand Surgeon and Spine Surgeon have all referred me to Neuromuscular Clinic for evaluation. Unfortunately, around here, it takes awhile to get in. Its been 4 weeks since the referral and I am now noticing a pretty obvious left foot drop and legs are like walking through wet cement. Twitches have now started in legs and back.

Fatigue and shortness of breath are starting to kick in. Finally have Neuromuscular appointment coming up in 4 days. As a lifelong athlete, I find myself in uncharted waters. Whenever I've been injured or overworked something, there was always pain associated. Does this sound like anything that might be ALS? Again thank you and I apologize for the long thread.
 
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Brad, being you only have 4 more days to go... I doubt anyone here would attempt to
make a diagnosis or tell you that it does look like ALS.

Hope you finally get a determination.
 
I can advise you make a time line and list of questions so you feel ready to talk your concerns through with the Neuromuscular specialist. The more prepared you are, the more you will get out of the appointment. But don't try to steer by asking do I have ALS, or asking for EMG or whatever. Give a clear description of what has happened so far, take copies of all your tests and summaries on them so far.
Please do let us know how this goes.
 
This would all be fast for ALS, esp. with an EMG only showing localized radiculopathy only a few months ago. Doesn't mean it can't happen -- there are fast progression cases -- but the odds are in your favor. We will hope they stay that way.

This sticky might be useful for your appointment.

Best,
Laurie
 
Thank you for your prompt replies. I will take all your advice. 3 days to go now for Neuro appt. will be back later with any findings.
 
I have an update after my visit with the Neuromuscular team last week. My wife and I are still processing the shock but the team of doctors confirmed to us that it is indeed ALS. We were only thinking a couple of hours and then a nice birthday lunch together, but it turned out to be 7 hours.
We are blessed to be near a major academic hospital and adjoining ALS clinic. After the morning of full work-up, walking and some follow up blood work (copper), they ordered an afternoon EMG. The EMG was much more extensive than the one in August and included 15 different locations. It was interesting to us that we had 3 separate doctors come in and poke the needle in different areas with the final doctor being the head of the clinic. In the end, they all 3 pulled up chairs (I looked at my wife and she was already crying).

The final report reads; "Clinical exam shows weakness in left hand 0/5, wrist drop, weakness in ankle dorsiflexion 1/5, brisk reflexes and Hoffman's sign. Evidence of upper and lower motor neuron signs." The EMG was abnormal and found evidence of fasciculation potentials throughout, fibrillation potentials throughout and enlarged polyphasic motor unit action potentials throughout. While I am not sure what all that means, the summary states; "There is evidence of a wide spread, chronic neurogenic process with findings noted in the trapezius, upper and lower extremities. These findings may be consistent with motor neuron disease in the appropriate clinical context. Meets Gold Coast criteria for ALS.

I know you all advise a 2nd opinion, but since all 3 doctors are Neuromuscular specialists and are part of the ALS clinic, would you think that pretty much covers the 2nd opinion?
Again, I thank you all for this forum and the time and advice that you offer.
 
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I am very sorry. To answer your question generally the second opinion should be an independent one. For example Mass General often sends to UMass even though the ALS clinic has a number of ALS physicians and a separate emg department ( one doctor does work in both but everyone else is different)

it sounds like you are in good hands. Have you considered a clinical trial? I imagine they discussed medications
 
Thanks Nikki,
That sounds reasonable. They offered some direction on 2nd opinion. I also have an appointment (already set up back in August) for Neurology at another academic hospital for Feb 2023. They've set me up with Riluzole 50mg and it looks like it will arrive this Weds.
Other than my left hand and foot, everything else seems to work just fine and I certainly do want to take part in clinical trials.
I have met the ALS clinic team and have been fitted for a wresting wrist brace and an AFO for the ankle
 
So sorry Brad, and 7 hours is brutal, but so thorough. Please know you are both now going through shock, be kind to each other as you process this and figure out your next steps. We have some resources in the stickies that might help as a starting point.
 
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