16 months

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Chester787

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Hi everyone, would appreciate your kind advice.

I’ve had 16 months of fasciculations that started solely in my left foot, spreading into both lower legs. Sporadic twitches elsewhere in body but primarily legs and one hand. In my legs/feet they are visible and constant. I don’t go ten seconds without feet/calf fasciculations.

Then 8 months ago I started getting a dull aching in one arm just above the elbow. It’s not in one spot, just vaguely around the area. I also cannot lift my arms up for long. E.g hanging washing out - I can peg a couple of items then bring my arms down to rest, then can do another item etc. My arms just feel tired so soon. Same thing for using knife/fork etc. This has definitely gotten worse over the last 8 months, but I do have full movement.

I have seen two neurologists and have had three EMGs over the last 18 months. They have shown fasciculations but nothing else.
Clinically, I have hyperreflexia.

Head and full spine MRI was clear, lumbar puncture was clear.

The neuros both say ‘watch and wait’ and are unclear what is happening. They say ‘your EMG is not suggestive of ALS’ which is obviously positive news but with the scary spreading fasciculations and worsening arm “weakness”, I’m wondering how long is safe enough to assume that I’m not watching and waiting for ALS?

Also, is the gradual “weakening” of the arms a common progression for ALS before actual failure?

I have read the helpful info on this forum, but also read info to the contrary elsewhere.

Thankyou for your advice.
 

ShiftKicker

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It's definitely reassuring to hear from your doctors that things are not pointing towards ALS. As you'll have read in the Read Before, there are quite a few conditions that can share some symptoms of ALS. The "watch and wait" is definitely a difficult position to be in. Unfortunately it means you have a loose collection of symptoms that don't fit any pattern the neurologists you've seen are familiar with.

It's not clear how recently you've been to see your doctor- if it's been a while, it can be helpful to see them again so they can examine you and track any changes. I'm sorry we don't really have any answers for you here, but being cleared by 3 EMGs means ALS would not be top of the list, nor would the forum members here be able to disagree with your neurologists.

Take care
 

Chester787

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Thanks Shiftkicker. My last EMG was two months ago and, apparently, was all clear.

Would anyone happen to know if any kind of imaging (mri, ultrasound etc) would show muscle damage?

My PCP isn’t really interested in getting involved and I just have six monthly neuro visits now. I’m wondering if an mri would show damage to the muscles to help diagnose whatever it is.

Also, would it be possible to have worsening localised muscle tiredness/aching/discomfort (eg the clothes hanging) for months and months before muscle failure in als?

Obviously at first I was hoping this may be anxiety but now with the ‘permanent’ localised muscle problems, I’m assuming that’s now unlikely. Thanking you all, kindly.
 

affected

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I hope you can work on your general health and start believing your doctors.
Turning now to the internet to help you figure it out yourself is a dangerous rabbit hole.
 

lgelb

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Yes, imaging can see some kinds of muscle damage. But what you describe would be myopathy, a weakness of many muscles, that would have been seen on EMG.

No, the months and months of feeling blah aren't part of outset. I still believe that there might be systemic illness involved. If your PCP doesn't want to be involved, I would try to find another, or do a telehealth visit with someone else for another point of view on what differentials might still be on the table. As you will have seen, though, sometimes benign fasciculations "breed" feelings of weakness, as perceiving them can be tiring in itself.
 

Chester787

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Thank you all very much for your advice. Your generosity of shared wisdom is much appreciated.
 
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