Worried about weakness, tremor, weird symptoms

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Ccat376

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Hi there. I hope everyone had been able to have the best holiday season possible.

I am worried about potential ALS (obviously, as I am here). I will try to make this as short as possible.

I am 27F which I know makes it even more unlikely to be ALS but not impossible.

About 2 months ago I started waking up in the morning with a very tightly clenched left hand that was stiff in the joints. Since then, I have noticed my hands being clawed or curled up a lot, and fingers a bit weaker (more on that later).

Around the same time, I started to feel odd while walking — like I was walking through sand or water. A week or so later, I started to have what I perceived to be tingles and other parethesias in my feet and legs(which I know points away from a dx).

The weakness in my legs has continued to worsen over the last few months. This has really worried me as before this started I was young, active, a runner. I am honestly not sure where it falls on the perceived/clinical weakness scale. I can heel and toe walk and do a squat if I really concentrate, but I shake like a leaf walking down stairs and my ankle muscles are stiff and shaky. I have seen a neurologist who did a very brief exam and didn’t really say much about the strength results. I am however very hyperreflexive, I believe bilaterally. The weakness is in both legs/feet/ankles, but worse in one. Thinking back, I have been tripping on somethings more than usual, but never fallen or tripped just over myself (there was always a slight unevenness in the path etc but the tripping was more frequent).

I cannot tell myself if there is any atrophy, if there is I do not see it clearly. The tingles and weird sensations have continued pretty relentlessly (which again I know is not typical of ALS, but now I’m second guessing if it’s just anxiety making me feel them.)

I have developed a tremor in my hand, noted by the nuerologist. This has made somethings hard, for example putting in a small earring the other day was almost impossible. I shake when gripping something very tightly, but I can hold a cup, text, button things.

The most recent symptom, which is what really spiked my anxiety about this specifically, is constant twitches in my feet over the last two days. It is in both, but seems worse in one. I have also had twitching in my claves and quads.

My neurologist has ordered an MRI and if that is clear, said she will order an EMG. I am just now in anxious anxious limbo.

I understand that while several things may align, others do point away, such as the tingles and the weakness being in both legs, albeit unevenly. I guess I am just wondering if ALS always manifests unilaterally/in only one limb at first, or if there are abnormal cases where that is not the case (most reputable info online says “usually”), or if it’s possible to have multiple limbs lightly affected at the same time.

I did ask my neurologist if it could be ALS and she said “I don’t think so but I’ve been wrong before” which was… not the most reassuring! Ha. Then she asked me if I had twitching. At the time I said no, but now I do, which is what has made my anxiety skyrocket. (Last 2 things— I have had twitches before, so on their own I would not be worried, just in totality. Also I do have high level of health anxiety that I am actively working through, but do not believe is the root cause of all my symptoms.)

Many thanks in advance for any thoughts. Wishing you all light this season.

Apologies, an addendum: the weakness and tremor do seem to fluctuate slightly day to day, if that is helpful. For example, my hand has been okay today and I could put that earring in with little trouble. Sometimes I am very shaky on the stairs and sometimes I am more steady.
 
Hopefully you will get the MRI and EMG soon and have some true answers.
Twitching means nothing, so don't sweat that.
Failure to be able to do things is the hallmark and you don't really have that yet.
Tremors are less likely to be ALS than other things. So while we can't say, without ever seeing you or an EMG that you don't have ALS, there is nothing that would get me highly concerned regarding ALS.

The best thing you can do now is concentrate on how many ways you can keep yourself in good health. Instead of googling diseases, google ways to practice mindfulness, how to increase quality sleep, exercise in ways that feel right, eat well and stay hydrated. All these things will stand you in good stead no matter what tests end up showing.

Do let us know the results once you have the EMG.
 
You need to have a frank discussion with your neurologist or pull up your portal notes to understand if you really have atrophy, abnormal reflexes, and the like. You're torturing yourself with maybes. And don't leave running behind, even if your pace is slower or your distance less. Your body often follows your mind.

I don't think you have ALS. Treating your health anxiety will likely improve your physical sensations.

Best,
Laurie
 
Thanks for your reply, I really appreciate your time. I will definitely keep the thread updated with any results.
 
Lgelb, apologies for late reply as I wasn’t aware I could only post once before being locked out for a bit. Thanks so much for your recommendation to check notes in the portal! The portal is new to me and I hadn’t even considered I could see the clinical notes.

Major bullet points on the physical exam:
-5/5 strength testing but nuero noted that “while power is normal there is diffuse tremulous”
-reflexes are 3+ symmetrical, no Babinski or hoffmans sign observed
-no atrophy noted
-reduced sensation to temperature and vibration bilaterally on feet/lower legs

Constant twitching started after the exam, which is what really got me worried taken together with everything else, though I know you all say that twitches don’t mean much so am trying to chill out about those!

Strength in my left leg has seemed to deteriorate since the exam, weaker and stiff, but I know that can’t be truly assessed by anyone but a doc, let alone people online! I think I have the classic worry that it’s too early and that this will eventually lead down a bad road, but am trying to convince myself that, since this exam came about 1.5 months after first noticing jelly legs, weakness, etc, something concerning would have already materialized given the progression and would have been able to be seen on exam?

Still moving forward with the MRI (though still waiting….) and likely EMG if MEI clear. Bloods all coming back normal.

I just wanted to update based on your suggestion to look at the notes. Thanks again for your reply.

Ps. My neurologist is not a neuromuscular specialist — I think they deal more with migraine and epilepsy — and the exam was very short, but hopefully this is basic stuff and anything truly concerning along these lines would have been seen/noted
 
The answer to your rhetorical question is yes, the exam would not have been normal clinically if the weakness, etc. that you perceived were truly ALS.
 
Try to stay away from here now that you have updated on the notes. Nothing at all is pointing towards ALS, so now you can choose how you spend your time. You never get a single day back. All the very best and thanks for sharing that great news.
 
Thanks, affected. Will do my very best to take your advice. Sincere thanks.
 
Hi there. I came back to update as I know it’s helpful to others.

My twitching continues to be near-constant in my feet and sporadically elsewhere. I finally had my EMG yesterday and the findings were reportedly normal. I addressed my anxieties with the doctor about the twitching who said that the EMG appeared normal and that (as the sticky says, of course) weakness is the complaint in als, and that many als patients don’t feel or notice their twitches. (I did not have true clinical weakness on exam despite having perceived/generalized weakness.)

I hope this helps someone else.

I have one final question before I promise (you and myself!) to try to put this specific fear to rest as I continue to figure out my symptoms: though my twitching is in my feet largely, the EMG needles were placed in my leg (quad and calf). Am I correct in assuming that, even though it was not directly in my foot, if there was something concerning it still
would have picked it up, even if it was early? Sincere thanks.
 
The nerves that innervate the muscles in your feet run from your spinal cord down through your legs (quad and calf). So yes, they tested the right nerves. Many people don't realise that ALS is a disease of the brain, spinal cord and neurones, not a disease of the muscles. They know the right place to test, and you were not tested to early.

I'm so glad to hear your news.
 
Thanks, affected, and for the invaluable resource you are to everyone who visits this forum! You will be in my thoughts.
 
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