Pre "clinical weakness" symptoms

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konus3791

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Hello everyone. I just want to say i appreciate the conversations in these forums. I have a question i haven't seen yet though.

I started getting persistent fasciculations in my left calf around March 2022 (24/7 pretty much). No other symptoms other than that (that i'm aware of). Then, at the end of may 2022, those twitches started in my right calf as well, though not as persistent. Beginning in June 2022, i admit the anxiety ramped up, but i also started to experience stiffness (not cramps per se) in both legs with subjective weakness. I've also over the past month started to experience mild stiffness/cramping in my shoulders and hands. I've also started to find it a little more difficult to do things with my right hand (such as cook). though i admit i can still to all daily living activities.

My question is, is it anyones experience that the disease progresses first with general aches/pains/feeling more run down before you actually experience some sort of "clinical weakness"?
 
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ShiftKicker

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Hi there-

From the terminology that you are using, it's pretty clear you've done a lot of reading already. We do ask that people read here first: Read Before Posting, as well.

The first thing to do, if you have concerns about your health, is to visit with your doctor. They can provide you a clinical exam and let you know if there are any neurological (or other) symptoms that need to be followed up on. Twitching is not commonly held as concerning unless there are other symptoms that come along with it. This is something your doctor can help you with.
 

Aaronmandevill

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How old are you? Regardless if having medical concerns best to see a Dr and possibly a neurologist to ease your mind.
 

lgelb

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We would generally advise starting with your PCP, not jumping to a neurologist on your own. The PCP can begin ruling out systemic illness, baselining your strength, and helping to formulate next steps. There are many specialties, such as rheumatology, otolaryngology, psychiatry, and gastroenterology, that frequently end up being more relevant to the issues explored in "Could It Be?" than neurology. It may also emerge that there is no reason to see a specialist at all.

With health care staffing ravaged by Covid, leaving people with serious illnesses in understaffed units, and the infection risks associated with such settings, self-referrals carry costs for patients and implications for others that were not as significant pre-pandemic.

As to your question about a pre-weakness phase with aches and pains, the answer is generally no. In ALS, the nerves that control movement, not aches and pains, are the ones affected, and the pattern that you describe, e.g. fast, widespread dissemination, doesn't paint an ALS picture.
 

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Hopefully you read the sticky post and saw that your question is actually asked frequently and the answer is no.
ALS is typified by failure to be able to do things, while feeling perfectly normal.
Good luck.
 

konus3791

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Thanks all. I guess i'm also wondering, with having had fasciculations for about 4 months now on the left calf, and on the right for over a month, wouldn't i have seen some kind of clinical weakness by now, not just my perceived weakness? Looking for reassurances i suppose, but that seems logical that i would by now if twitches mean the muscle is dying. In my mind, i see my left leg size decreasing (emphasis perhaps on "in my mind") and i admit i've had the ALS fear pretty bad since June, so i've lost quite a bit of weight (emphasis perhaps on "anxiety). But there's a part of me that's waiting for the proverbial shoe to drop. i feel like after 4 months something would have shown by now from the persistent fasciculations? Trying to get ahead of the anxiety too, so definitely started talking with a therapist as well as still looking to get into my PCP (she's booked another two weeks out).
 

lgelb

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Asked and answered -- twitches are not the sign of a muscle that can no longer be controlled. What is -- not being able to do something. I see no reason to suspect ALS, or any dropping shoes. If you are losing weight that you do not have to lose, certainly a good reason to work with a therapist.
 

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You are spot on - twitching alone means nothing at all, and you don't show signs of 'heading to' anything at all.
Please keep discussing with your doctor and therapist. All the very gest.
 

konus3791

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i was able to get a video appointment with my GP, and they referred me to a neuro, who i go to in early august. so at least that's moving in the right direction. Since my first post, i've noticed some pretty extreme exercise intolerance compared to what i was able to do only 8 weeks ago. also experiencing some numbness in my right little toe and some challenges eating. food feels like it gets stuck in my stomach for a while. i can eat food, swallow water, but my chewing feels "weaker" somehow and my tongue does too. The tongue isn't really able to push food around like it could before. also developing a raspy voice. finally, noticing cramping in my feet and shoulders and right hand. I know a lot of these aren't necessarily on the "read first" sticky. But it definitely has me concerned about how much things seem to be changing. all the same "perceived" leg weakness still remains too. Oh, and i've also begun to have body jerks as i fall off to sleep that keep me awake and also when i wake up. they only happen when i'm in a realxed state though. So, yeah, that one really has me freaked out.
 

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When you become really anxious, you hyper focus on all kinds of things. This hyper focus nearly always exacerbates things, and then you go into a loop.
With ALS, you feel perfectly normal, and your body simply begins to fail and moves in a progressive manner. If you experience a bunch of symptoms and feelings not in the sticky, then it has nothing to do with ALS. There are so many common things that could be going on, rather than trying to stuff your symptoms into something very rare.

The way you have all these different things happening all over the place totally points away from ALS. It is great you have a neurology appointment soon. Please believe what they tell you and let them guide the direction of tests and recommendations.

Do come back after that appointment and let us know what is said. In the meantime, focus on how you can improve your daily health.
 

konus3791

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Hi all. Neuro appointment tomorrow. Admit i'm pretty nervous about it. My legs feel fatigued/weak (not clinical) and it still looks like (to my untrained eye) that i'm losing muscle mass in legs, hands and feet. A weird thing happening i'm wondering about is that i have blankets i lay on at night that are textured and a particular bed shirt i wear that's textured. Every morning when i wake up that texture from the blanket and shirt is imprinted on my thighs and hands. I had read some things about skin elasticity, but is that a potential concern. and right side seems worse than left when it comes to that. Thought about heart realated, but just had cardio related tests and cleared by cardiologist.

Will bring it up tomorrow and any advice on questions to ask would be helpful/appreciated as well.

Thank you!
 

lgelb

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Two most likely explanations for imprints are heat/humidity and dehydration, not ALS. Let us know what the neuro says. Bring a summary of your issues timewise (including jerks when you are at rest, which could relate to RLS/related conditions) and let them take it from there.
 

konus3791

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i got notice shortly after my post today that due to a "scheduling conflict" my appointment was being cancelled and rescheduled to October. asked why they can't just keep bumping down the line and take me earlier, but they said it's because i'm a new patient, whatever that means. I'm beyond frustrated as i was really hoping tomorrow would bring some answers. so to get out some of the frustration i used my exercise bike. i mentioned before that i have perceived atrophy in my left leg. when i put on the bike shorts for the ride, the usually snug fitting shorts were loose at the left knee. so, i admit, anxiety has now ramped up as in my mind it's confirmed the atrophy i think i'm seeing. I'm sorry to vent on this of all message boards; i was trying to stay positive and take everyone's advice. but after that call i just feel utterly defeated as though nobody cares about helping me. i guess that's the way the health care system is set up and won't have an update come tomorrow or who knows when.
 

lgelb

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You can ask your GP for a different referral and explain why. You can also ask to be on the cancellation list where they call you if something earlier opens up.
 
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