Does anyone recognize these symtoms?

[Rak]

Hi everyone!

First, I'm so grateful this form exists. All my symtoms have been bilateral.

I first noticed something strange in december, while playing soccer indoor. After about 45 of play, my legs became really slow/stiff, almost like cramping, but there was no cramp whatsoever. My thighs especially hamstrings and also calves felt numb. I managed to keep my balance, but had to taka break.

Since then these symtoms have come earlier and earlier during physical activity. I have also had gradual onset of parestesia, numbing, prickling and other strange sensations in my legs. Initially only during for example running, now more or less constantly.

The latest addition of symtoms are a feeling of lactate build up in my hamstrings and glutes. It kind of burns. My legs kind of feel like ive been out for a 5 km run, even though I haven't. Lastly I since approx 3 weeks have fasciulations in my lower extremities. They are no worse at night and it has spread slowly more proximaly and I now have them all over, even in my face. The fasciculations vary in frequency and location, but do not stop.

My symptoms have been strictly bilateral. I have no pain, perhaps some backache in my lumbar area last three weeks, but no pain. I feel weak and slow in my legs, but can still do running, although it takes its toll. How sudden/abrupt is muscle weakness in ALS? Is it on/off or does anyone recall it being gradual in a similar way to what I am describing? Seeing a doctor tomorrow and a neurologist in a couple of weeks.

 

[ShiftKicker]

Hi Rak

If you could have a read here: Read Before Posting

It covers many of the issues that bring people to this forum. You seem to have a lot of sensory issues (burns, strange sensations, numbing, etc) which is not how ALS starts. Your doctor can provide you more feedback after your exam tomorrow, but this does not sound like something that would make a doctor concerned about ALS. As you will read in the link above, there are many causes for twitching, and the combination with sensory issues points away from ALS and to another cause.

Take care

 

[KimT]

First, it's not usually bilateral when it first gets noticed. Maybe talk with your GP would be your first step, get the necessary blood work that your doctor recommends and, with everyone, make sure you're drinking lots of water, getting electrolytes from fruit and veggies. plenty of sleep and, maybe, even giving up caffeine or reducing it if you're a coffee drinker.

 

[Rak]

Thank you both for your time and replies.

To clarify, I do not primarily suspect ALS myself. I am thinking more along the lines of some type of polyneuropathic condition, primary or secondary, vascular conditions or even functional. I am more or less a doctor myself (will be in june) and have basic knowledge of neurology and neuropathology. I am aware of the classical presentation of ALS (unilateral, motor function loss), but have also read about bilateral presentation. My fasciculations alone do not worry me. It is the progression over months combined with the muscle fatigue/numbing/"slow-motioness" that has me puzzled. And worried, I admit. I wish it was, but it is not a dietary or life-style issue. Something is up, question is what. Although, thank you for suggestions.

I guess what I am asking is:

- Is there anyone here that recognizes what I am describing? Gradual subjective sense of weakness, bilaterally. At first in combination with physical activity, after a few months already at rest/baseline activity? This in combination with other neurological symptoms, pain excluded.

Put otherwise:

- Does motor weakness come gradually or is clinical presentation more of a on/off phenomena, like say, drop-foot like? I am, very humbly, asking what your experiences are, not what the books say.

Apologies for asking things that may be obvious to you and also tiring to respond to, but to me, even with my formal training, is not.

 

[Nikki J]

As shiftkicker noted and I presume you know you have many sensory complaints and ALS is a motor disease

my experience was initially lateral ankle weakness no sensory prodrome. When drop foot came it came suddenly ( I could tell you the hour) and no warning.

 

[Rak]

Thanks to all for reading and/or replying. I have second question:

Background:
I had about a week of fasciculations in right leg in september. Mostly/mainöy thigh. It disappeared by itself.

Now:
In march it begun again, starting bilaterally in calves, spreading proximally to hamstrings, groin, front thigh, part of stomach (left part of rectus abdominis), right shoulder (not that often there), rarely in part of right thumb muscle, maybe in lower back (cant be sure there).

The only sensory symtom I still have is slight tingling in toes. Everything else has subsided. My Fasciculations are also not as frequent/intense as they started out, but they are constant and spreading. Constant as in I have them in somepart of my body at any given moment more or less. Calves are still by far the most common.

Met a doctor yesterday and were planning a mri (sacrolumbar) and she did some basic neurologic testing. My lower body reflexes seemed normal (not hyper) and she agreed. No babiniski.

Does anyone with ALS recognize what I am describing as initial symtoms/presentation?

frequent calves-fasciculations moving proximally and engaging more and more part of body?

my weakness is subjective. My calves and hamstrings feel shaky and tight. My glutes are burning if I walk a very moderate distance, maybe due to compensating for other muscle groups in legs I am speculating. The may even burn when I am doing nothing, which makes me think of sciatica (hope for), but it doesnt fit with the rest.

My worry is that there are not very many conditions that come with ”persistent”fasciculations and muscle weaknesss. Although my muscle weakness is not more than subjective at this point. What has me boggled is the experience of subsiding symtoms (but not vanishing). I am pondering if it this could be MS.

My only other symtom is fatigue. Extreme fatigue.

Any thoughts or reflections are appreciated. Especially if anyone can recall similar symtoms/onset.

 

[lgelb]

What you describe does not sound like ALS, no. Your weakness is subjective, as you acknowledge. Fatigue without functional impairment falls into much the same category. Beyond that, fascics and feelings of weakness can manifest from many conditions, meaning it is not true that somehow this combination makes ALS likely. And each is exacerbated by vigilance and self-testing.

As you know from your training, the important thing is to keep an open mind. If the doctor thinks MS is a possibility, you will be scheduled for a brain MRI. If you might have a spine problem, there could be a spine study and/or an EMG. Etc. The differential at this point is very wide, from an adult onset myopathy to a post-viral syndrome. There's no reason/need to guess.

Best,
Laurie