Leg stiffness, difficulty walking and muscle fasciculations

[Tiptop12]

Hi,
Thank you so much for taking the time to read this. The help your are giving people is so greatly appreciated especially as you are fighting this terrible disease. I'm very humbled to be here to be honest.

I am a 40 year male (healthy otherwise) with 2 babies.
About 6 months ago I had a dull ache in my lower right leg which I assumed it was nothing. Maybe referred pain, etc. It lasted a couple of weeks.. Took magnesium and did stretches. I stand mostly in my work for the day.
However aching returned in early June and seemed to move up leg into quad.

Went to a physio for a couple of sessions and pain seemed to move into hip, to other leg (left) and lower back (where its been ever since).
I assumed it was lower back issues. - pinched nerve etc. However in July started to have aches in the both arms too. At this point I visited my PCP and he referred me for a lumbar Mri.
This returned normal (no disc problems etc) as did standard blood work.
(I'm aware pain is not an usual presenting symptom).
At this point I was referred to neurologist but waiting time can be 6 months so could be 2022!

Since beginning of August to date my current symptoms have progressed a little which I have now had for 2 months:

1 : cramps and aches in both legs (but seems to affect left leg more). When going for a walk both legs -( particularly quads) become so heavy and stiff and I'm struggling to finish the walk. I still can but its like I have two sandbags strapped to my legs. (weakness?)
. Legs aches especially when standing.
There are also aches in arms and wrists but not as intense as legs.

2 Fasiculations which are constant mainly in legs (quads) but sometimes happen in hands, arms and back and shoulders too. The other night my whole quad started to spasm. - more than my usual little twitch.

If I was having fasiculations on their own I wouldn't be here but the fact I'm finding it quite difficult to finish a medium walk now has led me down this possible route of enquiry. (I loved mountain hiking and running in the past).
I have tried stretching, yoga etc but these don't seem to help. It's been constant now.

ALS was never on my mind until the leg stiffness and fasiculations started at beginning of August. I'm past the point of anxiety /Dr Google at this stage as I'm just fatigued by it all and letting nature takes it course as I await neurologist appt. However symptoms do feel like they are slowly getting worse. The fact I find it difficult to walk is the aspect that is worries me mostly. Every other symptom I feel I can handle. I can't see obvious muscle atrophy but then I've always had relatively skinny legs.

In general could this an be early onset ALS? I have read the initial posting and realise some of the symptoms I describe could be atypical.

I do appreciate that a major aspect of neurology is a waiting game too to see how symptoms progress.

Thanks in advance

 

[Nikki J]

I would go back to the gp. They are qualified to test reflexes muscle tone and muscle strength. If they see clinical changes then perhaps things can be expedited a bit. If they do not you can be reassured. It certainly doesn’t sound at all typical but a doctor ‘s opinion is what matters. They might also see things that point in a non neurologic direction

 

[Tiptop12]

Thanks Nikki for the swift reply. Really appreciate it. My GP did do a reflex and strength test a few months back at initial onset of ache in legs. (Mainly before heavy legs and fasiculations started) and all seemed OK. The heavy stiff legs started after. Am I correct in saying that heavy stiff legs is not necessarily weakness even though it feels it? I tried a jog one evening to test my legs and once I got into it I was moving OK (I didn't feel very fluid like though and I felt very stiff afterwards). I have also tried squat with back against wall to test quads and they seem to currently hold up. I'll touch back base with GP and get above as mentioned assessed again.

 

[Nikki J]

Neither of those things sound like you have any weakness. The gp is the person who could see if there is any clinical change so I repeat my recommendation to make another visit there

 

[affected]

No heavy stiff legs are not weakness.
Try a good read in here, I think it will clear a lot up for you. Definitely keep working with your doctors who can examine you each time you think there is a change.

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

 

[Tiptop12]

Hello all,

I just said I’d a give a quick update:

So I eventually got to see a neurologist recently due to a cancellation . I was checked over and brisk reflexes (not pathological) were noted . The Neuro had a look but observed no fasciculations at the time. Near the end of the appointment I queried about ALS but they didn’t think it was too likely (perhaps CFS) . Im scheduled for MRI for brain and spine and if clear I will be then sent for an EMG. I think they’re going to be thorough regardless.


Since then :

1. Fasciculations still persist all over the body (nearly constantly especially when at rest) but mainly in legs, arms, shoulders ,stomach, hands and feet - I've taken a few videos now! . Still have the odd spasm in the knee. I have leg jerks too, especially when sitting or in bed.
2. Stiffness and heaviness in legs has improved thankfully since and legs have loosened up yet transient aches still persist
3. My back still aches a little in the background but I’m able to function normally.
4. NEW - Atrophy - Shoulders in general have been aching and feeling a little weaker lately (not failing though) as I've been struggling to complete anywhere near the same number of pushups as I did last year. When I looked a few days ago there were massive dents in my deltoid arm muscles which I've only noticed since after the neuro appointment. The same dent is in the left arm but to a lesser extent. It's like a big cavity in the deltoid muscle (front) - as if part of the deltoid had vanished. When my arm is down by my side it is not noticeable. Hence why it wouldn't be obvious in an exam or in day to day life. I'm 100% sure that these were not there before as I would exercise a lot in the past and be very observant of my arms and shoulders. I don't think I have obvious atrophy anywhere else and also the Neurologist checked me over. However this wasting is only really visible when I hold my arms out forward. I have been having fasciculations and aching in my shoulders so this is why I looked recently and got a fright.The neuro had asked me if I had seen any wasting which I replied 'no' because of course I hadn’t seen this yet as I had been so preoccupied with my legs!
5. Intolerance to exercise. My muscles in general ache if I try to be active . It's like my muscles are weakened and fasciculations intensify afterwards.

I guess the constant profuse fasciculations, large dents in my shoulders, brisk reflexes ,transient aches and general intolerance to exercise make me still query ALS ?

Of course without diagnostics at this point ,it's impossible to say sure for what's going on
but as always I really appreciate your insights and help.

 

[lgelb]

It is very difficult to assess dents with photos and you know your body best. However, it's worth noting that there are some comparatively benign disorders that can present with shoulder/upper arm atrophy. It sounds like your neurologist has a reasonable plan so I would go through the process.

Best,
Laurie

 

[Tiptop12]

Thanks Laurie,
Trying to stay level headed as I wait for tests/results. It's tough! I'll post any updates as they happen.