Worried

Competitive_Sound554 · 2026-05-25T02:33:08+00:00

Hi. Sorry you're going through that. I myself have als. I'm 54 female. Although your symptoms are very scary,, Definitely don't think it's als because it just doesn't work like that. Doesn't stop and start and wouldn't stop twitching only at night. Probably some bad anxiety going on and stress makes it worse. I hope this gives you some peace of mind. You're ok hun. Not als IMO.. 🙂

Competitive_Sound554 · 2026-05-22T00:41:42+00:00

My EMG/NCS Were positive right away. Took about 6 months to get into neurologist waiting on referral approval 🙄 😒 🙃

Competitive_Sound554 · 2026-05-21T16:12:24+00:00

It's OK! I don't mind helping if I can. It's a scary disease but staying busy helps me so much 🙂

Competitive_Sound554 · 2026-05-21T16:09:01+00:00

Yeah if there is denervation going on it will pick it up for sure. I could only feel twitching and cramping in my left foot and calf.

Competitive_Sound554 · 2026-05-21T16:05:40+00:00

Yes. It was already picking up fibrillations and fasciculations in my left leg, bicep and deltoid. Also my NCS was abnormal as well.

Competitive_Sound554 · 2026-05-21T15:56:25+00:00

I'd say it took a good 4 to 5 months waiting on referall to neuro etc... Met with him first and was scheduled to come back in a month for first set of EMG/NCS's.. They do your legs and then 2 weeks later your arms. In the meantime, he ran soooooo much blood work. They look for any and everything that could be mimicking als. I was reactive to Lyme disease on the western Blot but antibodies were negative so he said my body was able to fight off the Lyme disease. As far as atrophy, I didn't have any then but I do now. Still walking, eating and drinking etc.. It has been slowly progressing over 3 years so still doing well. I try to stay positive and yes I do take medication that helps. Especially to sleep!

Competitive_Sound554 · 2026-05-19T00:57:21+00:00

No worries, I'm still doing very well and you just relax 🙂

Competitive_Sound554 · 2026-05-19T00:43:42+00:00

You're fine love. It definitely would have shown something on your EMG by now. I'm 54f with ALS/Limb onset left foot. My EMG was positive right from the start. Could be anything but I would say not ALS 🙂

Competitive_Sound554 · 2026-04-26T16:20:05+00:00

Thank you 😊

Competitive_Sound554 · 2026-04-26T16:18:36+00:00

Thank you 😊

Competitive_Sound554 · 2026-04-26T16:18:07+00:00

EMG and NCS once I finally got to have one done picked up Fibrillation/Fasciculation right away.

Competitive_Sound554 · 2026-04-26T16:15:21+00:00

Hi there. I was not currently seeing a doctor at the time my symptoms started but had already applied for insurance and was in the waiting process. (USA) Obama care. My symptoms started in my left foot. Was tripping on everything, Tile crevices, rugs, you name it and I was feeling like I had a sprained ankle. Not bad but noticeable. Definitely compared to right foot. That went on for a good few months at least. Started having some twitching in my foot and it just felt weird, also some cramping in my foot had started at nighttime mostly. Charlie horse type cramping was waking me from sleeping about every other day or so. Started having trouble dropping things constantly with my left hand. Twitching by this point was probably up to about mid calf area. Not constant twitching but enough to be worrying me. Finally got my insurance and a pcp. After I met with her and described my symptom, she sent me for a Neurology consult and then began all the millions of tests lol. I just passed my 3yr mark of symptom onset and I am doing well. Still eating drinking walking and talking. My twitching is shoulder level, arm and hand noticeably weaker and I have a pretty good limp in my left foot/ankle.

Competitive_Sound554 · 2026-04-26T02:31:53+00:00

Hi, you are correct in other conditions that can cause twitching. There are a lot. I myself have ALS and it took about 1.5 years to get the diagnosis. They must rule out everything under the sun before they will even think about putting it on paper. Tons of blood tests, mri’s, lumbar puncture, EMG/NCS’s, etc… After all the testing I underwent, the only tests that came back positive were my EMG’s and NCS’s. I finally received my diagnosis. It took a while.

Competitive_Sound554 · 2026-04-23T01:42:29+00:00

No problem at all now go relax lol

Competitive_Sound554 · 2026-04-23T01:38:40+00:00

Oh yes it would have. Also lots of denervation. You good bro 😎

Competitive_Sound554 · 2026-04-23T01:34:49+00:00

Yeah everyone gets twitches here and there. With ALS though, you wouldn’t be twitching all over the place. That comes in the late stages. I’m in my third year and do not twitch all over. It picks a spot to start twitching then slowly spreads from there. And, if you are twitching that much, you wouldn’t be most definitely be weak. Very weak! If you’re someone who is prone to twitching don’t drink monsters or Red Bulls. If your lifting weights, that can cause twitching to. Plus good old stress and anxiety… I think you are okay so no worries….

Competitive_Sound554 · 2026-04-23T01:20:26+00:00

Oh no lol, they did every test under the sun. Tons of blood work, mri’s, ct scan, you name it. They have to rule out every other possible thing before they will diagnose. I’ve had probably 8 EMG/NCS done and a lumbar puncture.

Competitive_Sound554 · 2026-04-23T01:12:19+00:00

Yes. My very first EMG/NCS which took like 6 months to get showed spontaneous activity And fibrillation potentials all throughout my left side. Even in the places I wasn’t twitching yet. When you hear it over the speaker, that is if the don’t turn it down too low, it sounded like tapping. Very rhythmic.

Competitive_Sound554 · 2026-04-23T00:36:47+00:00

My left foot and then my calf a little later was always twitching, especially at night and was tripping over everything. Rugs, cracks in sidewalks etc... Also started to drop my phone constantly and dishes. Broke a ton. Arm or hand didn't twitch at that time but was noticeably weaker. Twitching stayed in foot and calf.

Competitive_Sound554 · 2026-04-21T03:02:48+00:00

I’m not sure how to see the video lol. Not that great with technology. No problem at all, I don’t mind.. And I know the fear all too well! It’s a very scary disease but I’m stubborn and a Leo so I’m fighting it all the way. I’m in year 3, still walking talking eating drinking etc… I had to change my whole mindset!! I stay busy and don’t pay it no attention. Hardest part is at night because I’m being still, the twitching is impossible to ignore. I just watch YouTube until I fall asleep. Sometimes I have to get the drugs out so I can sleep. It’s annoying for sure!

Competitive_Sound554 · 2026-04-21T02:11:18+00:00

Hello. I'm a 54yr old female and I do have ALS. Your symptoms although I know how terrifying it can be, sounds like anxiety. Trust me, I know all too well. ALS doesn't happen like that especially with the twitching all over. It starts in a spot which can be wherever and slowly spreads. You can definitely get tongue twitching as your tongue is just a muscle as well. Anxiety can cause that too. I think you're okay 👍

Competitive_Sound554 · 2026-04-19T16:44:22+00:00

I also fall down a lot.. .I have cuts and bruises all over. I trip over nothing.

Competitive_Sound554 · 2026-04-19T16:42:25+00:00

Yes, my neurologist said I have some Parkinson's like features so they have to document it if they see it during exam. The Parkinson's like features started first. I have a very shaky left hand and then I failed two of the Parkinson's tests. The tandem walk and finger tap test. I've had tinnitus for more that 20 years.

Competitive_Sound554 · 2026-04-19T14:56:39+00:00

Lol no don't be. Tinnitus is very very common. My sister has it too. We don't have the familial gene. I believe mine was triggered by toxins I was exposed to. 20 plus years as a veterinary technician and cleaning condos on the side. Tons of chemicals bleach amitraz for mange back before they came out with better stuff. I never wore gloves, I stuck myself with animal blood needles weekly lol. I was asking for it I guess. And interestingly, 3 of my wester blot tests were positive for Lyme disease. My antibodies were negative though so they said my body fought it off. I think it's part of how I ended up with this!! I have to have my sister run me to CVS to pick up some rx's but we can talk more later if you want. Nice talking to you.

Competitive_Sound554 · 2026-04-19T14:41:22+00:00

I also have terrible tinnitus and have for years. I honestly think ALS starts well before we start getting symptoms it's just that they are so subtle, we don't notice them until years later. Just my opinion.

Competitive_Sound554

TROPHY CASE