Could this be ALS?

[Jimmi]

God bless you all, those with ALS, those caring for ALS patients and those running this site.
I am very concerned about my symptoms and would greatly appreciate any feedback.
61y M, no family history.

Feb 1- Feb 24: very mild and infrequent twitching of left thumb base, every few days.

Feb 24, 4:30 AM- Feb 26: very sudden onset rapid fire and strong twitches at left foot arch. Twitches expanded rapidly to both legs by same afternoon and to full body by that night when sleeping, mostly from waist down, front and back of legs. Some scattered arm and body twitching. Left thumb started twitching more frequently and intermittently during each day.

Feb 27-Mar 1: left foot arch twitch ended. Started intermittent mild cramping both legs, calf and thighs, with continuing leg twitching, and with less upper body twitches. Symptoms also during sleep. Left thumb intermittent through each day.

Mar 2- Mar 8: variable strong twitches and mild cramps, sometimes constant for hours, sometimes brief, both legs, calf and quad muscles, both arms, biceps, shoulders, once on chest wall and on jaw. Continued left thumb twitch, especially when using thumb. Everything worse at night during sleeping.

Mar9- currently (Mar 11): most of twitching suddenly decreased significantly in strength and frequency, especially arms and body, sometimes stopping completely for many hours throughout the day, but still have occasional mild twitch or cramp/ fatigue at left calf or left biceps. Mostly twitching or cramping if used the muscle, such as in calf or arm. Left thumb still twitching throughout the day. No symptoms during sleep for 2 days.

No noticed weakness ever. All electrolytes and routine blood tests are normal.

Neuro exam normal and Neurologist said BFS, on Feb 29.
Follow up EMG/NCS, for April 9. (Very hard to get appointments. I had to plead with neurologist for follow up appointment. She didn’t think I needed to return for 1 year.) Second opinion scheduled for mid April.

Any thoughts ? Thank you for your time. God bless you all.

 

[lgelb]

Sounds like you have been worked up appropriately. I have no reason to think of ALS vs. BFS, and sounds like you don't, either.

If the EMG is normal or indicative of something other than ALS, like a pinched nerve in your thumb, I would consider canceling the second opinion so someone more in need can take it. As you say, neuro appointments don't grow on trees.

 

[Jimmi]

Thank you for your reply. Are you suspecting more likely BFS? My one additional thought was this: for my age, if als twitches come before weakness or if als weakness comes before/ during the twitches. I read various opinions on this question. Thanks again.

 

[Nikki J]

Overwhelmingly for every age and risk category weakness precedes twitching by a huge margin. It is true that is those with twitching first those include men over 50. However even that group usually have weakness on their clinical exam and they will have an emg that is suspicious for ALS.

Speaking of the emg, it is exceedingly likely that there will be some abnormality on the emg because it doesn’t just show als it shows many things. One of those is old injuries and at 61 your body may show signs of wear and tear. They can absolutely tell the difference so if your report says abnormal but your doctor says it is ok or a spine issue or whatever but no ALS it is important to accept that

 

[Jimmi]

thank you for your reply. For a few days now vast majority of previous body wide twitches in legs and arms stopped, and for three days both legs and right arm felt normal, leaving just soreness or strange mild feeling of “stiffness” in left arm muscles as if I was weight lifting. Yesterday I had a few very strong emotional reactions about something (unrelated to current situation) and very shortly after that last night and all day today I had sudden feeling of mild “stiffness” of both leg calf muscles and both arm brachioradialis and biceps as if I was lifting heavy weights… just like that, as if all previous improvements were cancelled out.

So can ALS twitches and cramps virtually stop or tremendously reduce after several weeks, almost completely, and then have some type of mild “stiffness” return in their place, bilaterally? I’m rarely having twitching now anywhere and with eyelid twitching occasionally. My strength is still normal. I’m really confused. Shouldn’t als twitching remain constant wherever until the muscle atrophied? Everything started February 1 and Feb 24, as described above. Please note on Feb 24, suddenly an “explosion” of tremendous twitching started in my left foot arch and rapidly progressed to both legs and arms to my entire body that night for 3 days, worse at night, with mild “precramps” and “stiffness” in major muscles of legs and arms and then over a few days to few weeks stopped almost entirely in both legs and right arm, but returning last night as described .

Thanks for your reading and thoughts.

 

[lgelb]

No/I can't really parse "ALS twitches and cramps"

The "explosion" you describe has nothing to do with ALS, nor does the pattern of twitching/stiffness/present/absent. But stiffness that follows strong emotion sounds very much like stress or something related to it, like not eating/drinking right or lack of sleep.

Again, expect the EMG to be completely reassuring as regards ALS. But while you await it, no reason not to live your full life instead of worrying.

 

[Jimmi]

Thank you for your consideration and time for replying. I have an EMG on April 9. My total body symptoms over the past few days, seem to have consolidated into or settled into the following pattern: I have bilateral biceps or brachioradialis mild cramps and mild spasms - on and off- for at least several minutes to maybe 15 minutes at a time, all day for about 2-3 days, provoked by a mild use of my arms or slight pressure from my short sleeve cuffs, or leaning on them when reclining, and I have had no more than a few seconds or few minutes of very focal (1-2 inches diameter) scattered bilateral thigh or calf aches or mild cramps, for the same 2-3 days, and very few and greatly reduced scattered twitching either in these limbs muscles or elsewhere. No atrophy. Strength is still very good, tested by my family. Left thumb thenar muscle twitches seems very reduced or not noticed at all, and with no apparent atrophy. Night time or resting time has very few twitches or rarely, few scattered slight mild cramps. All this started on abruptly on February 24 and evolved into the current state. (Thumb twitches started Feb 1.) I’m at a loss to figure this out as it now stands and hoping it’s not early ALS in my current state. I would appreciate your last thoughts on my current symptom pattern, or anyone else’s thoughts and comments, until I get my EMG next month.

May God protect everyone here and myself worried about als and those suffering from it. Many thanks to you and all the other very kind folks here who replied to me and to others. God bless you all.

 

[Jimmi]

Hello All, my emg was advanced to later today. I am somewhat worried because both arms are now having biceps and brachioradialis intermittent tightness and mild ache, with or without using my arms and sometimes triggered by my clothing or positioning of my arms. For my legs, very little and much reduced muscle tightness or ache, greatly reduced from past few weeks and greatly reduced twitches everywhere: arms or legs or body, as compared to several weeks ago and initially. Greatly reduced twitches on my left thumb thenar base but still daily. My cpk was normal and reduced when compared with 3 months ago and my ESR and CRP are elevated compared with 3 months ago but still in normal range. My GAD-65 autoantibody was mildly elevated at 10x upper limits of normal but possibly a false positive due to low dose immunotherapy from a few weeks ago. I am trying to get this repeated soon. I don’t know if all of this represents ALS or maybe BFS or Cramp-FS or a variant of Still person syndrome or fibromyalgia or something else. Everything started in February 2024 as far as I know. God bless you all.

 

[Nikki J]

Let us know when you have results to report

 

[Jimmi]

Thanks for your reply. I am concerned about the findings on the neuro report stating mild insertional activity at left gastrocnemius and mild polyphasia at left biceps femoris short head, which I understand are also seen with (mild or early ?) ALS. The doctor thinks that these mild findings are due to previous left side lumbar disc disease at the L5-S1 level which caused a very severe left sciatica and was very protracted for a few years before I had surgery 12 years ago (microdiscectomy and partial laminectomy).

I’m unable to follow any of her technical EMG data but simply relying on her summary.

The neurologist said not to worry about ALS but after I read her report and looked up those two findings, I began to worry again about mild early ALS.

The doctor is a general neurologist and I scheduled a second opinion for April with an ALS/motor neuron specialist neurologist.

What’s very interesting is that currently I have had great improvement in both leg symptoms with very little to no noticeable symptoms anymore, for over a week, but I still get few to occasional mild twitches in my left calf and lower lateral back of my left thigh, which makes me worry now after reading that report with the left gastrocnemius and short head of biceps femoris findings.

Any thoughts or ideas about the EMG report would be very appreciated.

Many thanks. God bless everyone.

 

[lgelb]

As they say, ALS isn't suggested by this report. You might benefit from PT -- I'd ask. You're good to go as regards ALS.

The report mentions past spine surgery, that you didn't mention, that also matches up with the findings. It's very common to need PT after this kind of surgery.

The twitching matching up with the slightly abnormal findings suggesting some spine nerve damage beyond what the surgery was equipped to address (which may also get better with time), merely confirms that you might benefit from PT, and is not suggestive of motor neuron disease.

 

[Jimmi]

Thank you everyone for your help.