UMN-predominant symptoms and some atrophy, but no clinical weakness


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Aug 3, 2023
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Hi all,

I've been having problems for the last 1.5 year now:
  • Hyperreflexia
  • Stiffness (incl. my neck and cheeks)
  • Fasciculations
  • Cramps
  • Sometimes very minor clonus, but not consistently - most of the time it is not present
  • Paresthesias (feeling of cold or pins and needles)
  • Sometimes, dull pain in the affected areas. Especially the thighs.
  • Limbs fall asleep extremely easily (such as when laying in bed or crossing legs)
  • Symptoms worse in the morning, get better throughout the day
  • There are relapses and remissions in the order of months. There's always a couple of weeks where more new muscles are affected, then a few weeks where it kinda stabilizes and after that it begins to sort of resolve. 9 months into these issues i even had a period of 1 month where it all resolved to such a degree that I completely forgot about it and was even skiing no problem. Then one month ago, it came back in a big way.

In the last couple of days I have noticed atrophy in my left forearm and my left abductor hallucis (foot). There is no loss of function, but the left forearm gets tired very easily, and the abductor hallucis muscle twitches like crazy a lot of the time.

Here is a picture of my left forearm: removed by moderation. Pictures not allowed
Not including a picture of my feet because it is particularly hard to take a picture of that and I doubt people are interested in seeing my feet anyways.

My needle EMG from 7 months ago:

The table is a bit misleading - it lists 7 muscles, but only 4 were tested (only those that have a value in "insertion activity" listed).

Other tests done (all around a year ago):
  • NCS normal
  • Brain MRI normal
  • Tetany test positive
  • Cervical spine MRI: shows quite some narrowing of the canal, but no myelopathy
  • Lumbar spine MRI: perfectly normal
  • The EMG report said that there are probably some very light chronic nerve root issues at C7 and L5, the MRI reports said those particular levels are fine.
  • Tons of blood tests: all normal, aside from chronically low Vit D

I've got wildly varying opinions from three different neuros:
  • One says it's FND due to anxiety
  • One says it's due to irritation of the spinal cord by the narrowed spinal canal
  • One says he simply has no idea
What could this be? An atypical presentation? A mimic of some sort? I would be glad to hear any pointers. I'm past the anxiety phase, I just want answers.
Your previous thread here: stiffness-twitching-all-over-the-body-bilateral-burning-sensations

Hello, and sorry you find yourself back here and are still looking for answers. My first question to you- you state "UMN predominant symptoms". Have these been observed and diagnosed by a neurologist? My next question is, have you reported to your doctor your new symptoms?

As we noted in your last thread, you indicate a fair number of non-ALS symptoms. This means whatever you are struggling with will be found in a different direction than ALS. You can't cherry pick symptoms and ignore some others. Sensory issues, symptoms that come and go or disappear entirely means you are looking in the wrong place here.

Recommendation to return to your doctor to update them on your new symptoms and let them guide you in diagnosis. Understood it is frustrating to not have answers, but it still is not looking like ALS based on your reported symptoms, your multiple neuro exams and your clean EMG.

Take care
Hi and thanks for your answer.

I have confirmed brisk reflexes and a positive tetany test, but I've been told those findings are benign and are of no pathological or diagnostic value. No babinski or anything.

I have reported the new symptoms (aside from the atrophy, I only noticed that during the last few days) to one of my neurologists (the one that thinks it's FND). He said he does not see the need to repeat the scans or EMG unless there's a change in the neurological examination. To be honest - I strongly disagree with that, as my scans are now over 1 year old and in the case my spinal canal space got much worse in the meantime, to me, that is saying "let's wait until it gets really bad before doing anything". I have made appointments with my other two neuros but there are long waiting times.

There are definitely some sensory symptoms as you say. A few days I had an episode like this:

My left leg cramped up a whole lot, then shortly afterwards I got a huge urge to move that leg. Exactly like restless leg syndrome, but just in that leg. When I started tapping the leg, it was forcing me into a certain rythm, like clonus. In a few minutes after that, I felt a cold sensation in the leg (the same kind you feel as when your limb falls asleep and then you restore blood flow). When that happened, the whole leg got much better.

A major concern of mine is limbs falling asleep easily. I did not consider this a symptom of MND until I came across a thread from a different ALS forum dated to 2007, where PALS are discussing exactly that as an early presenting symptom

That is, what ultimately brought me back to some considerations of MND.
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I note that you are dismissing as important any symptoms that don't fit into what you think indicates ALS. You are also disagreeing with your doctors about what is, and what isn't, helpful diagnostically. This forum is not a place for people to argue a case for ALS despite signs pointing elsewhere, nor will we disagree with the medical professionals who have examined you in person.

If you wish to discuss your symptoms and get more information on what might be the issue, you must return to your doctors. You have been cleared of ALS, so this forum, which exists to support those affected by a diagnosis of ALS, would not be helpful to you at this point. Your eventual diagnosis lies with your doctors and not with an ALS forum.

Please take care.
That thread you mention was not discussing that was an early presenting symptom. The PALS were attributing it to their weakness and immobility.
Are you supplementing the Vit D? If you have clinically low levels, that could influence what you describe.

Of the three answers you have received, describing an indolent process over 1.5y, none is sinister or dire. None shows up on tests as worrisome. Sometimes there is no single answer or inciting event, but the fact that 3 neuros are unconcerned should tell you something, and it is perfectly appropriate to defer a repeat EMG from 7 months ago pending new findings on exam. Evidently the atrophy you are concerned about is not a concern for them, and we are all asymmetrical, often with various lumps and bumps that cloud the picture.

Millions of us have blips (mild nerve root damage) on spine studies. You can spend your time waiting for it to get worse, or you can make sure you stretch daily in ways that gently elongate the spine, try to avoid abrupt twists from the waist (e.g., don't try out for the NFL), and live your life. Bodywork like Tai Chi or qigong should help and would be a much more productive way to spend your time than reading ALS posts from 2007!

You can probably guess which approach I'm recommending. If you cannot move past these ungrounded fears, I would seek counseling.

All the best.