Probably on the eve of diagnosis. . .

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EricInLA

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Joined
Oct 20, 2019
Messages
218
Reason
PALS
Diagnosis
01/2020
Country
US
State
CA
City
Los Angeles
Hello folks,
I am a 49-year old male in Southern California, living with the fear that I have ALS. I know this is a familiar trope, because I have spent many months reading posts on this support forum. This is the first time I am posting. Let me say first that I'm so impressed with the level of care and support that this community has given to others living with and dealing with this disease. I'm sure it's all you can do to get through the day, yet you are giving your time to others. It's awe inspiring.

I am posting now because I hope to solicit useful information, and also I suppose for moral support. My situation - 17 months ago, I started twitching all over, though mostly concentrated in my right arm. Also, my hands had a definite tremor. Doctor referred me to neuro, who ordered MRIs on brain and cervical spine, as well as EMG/nerve conduction. Brain MRI was normal, and cervical spine showed some curious stuff (disc protrusions, stenosis, etc..), but nothing unusual for someone my age. EMG was the scary one - I would probably characterize it wrong, so lets just say it wasn't "clean" - the view of the doctor who conducted it was that I most likely had ulnar neuropathy and some right and left radiculopathy, though he said in the report that given the widespread fasciculations plus hand weakness, he couldn't eliminate the possibility that it was the beginning of something that could "evolve into" MND, and therefore I might have to repeat the test. Of course, that last part is what prevented me from sleeping for the next two weeks. Then I went back to the neuro, who said this was more good news than bad, and that I should continue living my life and not worry (OK. . . .). He also did the clinical tests on me which checked out fine. That whole serious of events took place over the course of May, 2018. From there, I actually did put it in the back of my mind and continued with normal life for the next year and a half (with occasional return visits to the neuro, who repeated the clinical tests - all fine)

Fast forward 17 months later, to now. For the last 17 months, although my fasciculations have remained, very little progressed ALS-wise. I've spent way more time on the Internet than I should, so I know all the signs and symptoms. I know it's about failing, not feeling, etc.. And I have felt stable. No failing. A few small things - Wartenberg's sign once in a while (pinky wont stay with other fingers), but nothing affecting my functioning. As the months ticked away, I felt more confident that the ALS worry was in the rear-view. Then a couple of weeks ago, a few small things started happening - right thumb can't do everything that left thumb can. Writing feels strained because of weak pinky and ring finger. Stuff like that. Some irregular soreness in right arm after a workout. So now I'm back into panic and anxiety mode. Can't sleep. Feel like I'm dying and will leave wife and kids behind. So my question for the community - did anyone else have a plateau that long? Any thoughts? I have booked a new neuro appt and a new EMG which will tell the tale I'm sure, but thought I would inquire. Thank you for taking the time to read this.
 
You are probably NOT on the eve of [ALS] diagnosis. Presuming your next EMG is similar to your first, if you never got PT for your hand issues and continue to keyboard, etc., is it really any surprise that you have new symptoms?

After the EMG, consider hand therapy. Depending on the extent/anatomy of the radiculopathy, you might also want to have your spine evaluated from the PT standpoint as well.

You can't "plateau" in illness you don't have. I very much doubt you have ALS.

Best,
Laurie
 
Thank you for that, Laurie.

I should add that one of the things really contributing to my fears is that I have NOT had pain, which it seems is generally associated with the neuropathies and radiculopathy.
 
Honestly mate, no that's not even remotely like ALS. You have already booked more testing so that is where your answers will be found, if you will only believe them. You got excellent advice above from Laurie as well. Please come back after your new tests and let us know the result. I hope you realise that's it for what we can say.
 
Thank you for the prompt responses - I appreciate the benefit of your experience with these issues - your responses helped me sleep better last night. I suppose it's the constant reminder from the incessant arm fasciculations and hand tremor that make it hard for me to put this all out of mind. Plus I have this weak "pinch" with thumb and forefinger on right side, the professionals call it "Froment's Sign". Does anyone know if that phenomenon is linked to ALS?

OK, I will update after I visit the doctor. Thanks again for all you do.
 
From Wikipedia: Froment's sign is a special test of the wrist for palsy of the ulnar nerve, specifically, the action of adductor pollicis.
That has nothing to do with ALS.

Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described.

You have not described anything even remotely resembling ALS. Please do not post again until after you see your doctor. Please don’t hyper focus on every little symptom and report them to us. Save your questions and concerns for your doctor. Thank you.
 
Hi again - I had my neurology appointment yesterday. The doctor believes I do not have ALS for several reasons, including 1) fascics are very widespread -- not focal; 2) insufficient progression of symptoms over 16 months; 3) my feeling of slight tingling on right hand; and 4) results of clinical exam. He feels my hand and finger weakness and awkwardness, handwriting difficulties, etc.. are due to ulnar neuropathies going on. And he says the hand tremor is a separate issue. I'm trying really hard to believe him (it's just tough with the constant twitches, tremors, hand challenges). However, he seemed very sharp and knowledgeable, so I take comfort in his diagnosis. He also said I could forego repeating the EMG test, which I thought interesting, but I'll go with it. Thank you for your feedback on this thread.
 
Congratulations on being cleared of ALS. Please believe your doctor. He has had years of training in his specialty. There is no reason to get an EMG if your exam doesn’t support a diagnosis of ALS.

Please know that we’ve seen numerous extremely anxious people who have difficulty accepting their doctor’s conclusions and keep chasing ALS even when a very knowledgeable specialist has cleared them of it. People can waste months or years of their lives with senseless worry. You don’t want to go down that rabbit hole. Time to let go of ALS and enjoy the rest of your life . Seek help for your anxiety if that proves too difficult.

And it’s best to stay away from this forum for your mental health. Best of luck.
 
I appreciate those wise words, and will repeat them to myself when I get anxious about this stuff.
 
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