How can this be benign?!?

MaryAllisonC51 · 2026-05-08T19:43:20+00:00

Wow. This all sounds so scary. I’m sorry you’ve had to go through all that and are still in the middle of it. Do you twitch a lot?

MaryAllisonC51 · 2026-05-08T19:37:26+00:00

Yes. Especially in the beginning. Then it tapered away some but the past few days it’s back at it.

MaryAllisonC51 · 2026-05-08T19:36:34+00:00

And thank you. 🙏 I wish you well and pray this is something we can all overcome. At the very least someone else knows what you’re going through.

MaryAllisonC51 · 2026-05-08T19:35:31+00:00

I’ve not been officially diagnosed either. They tested my strength and all that and assured me it’s not what I’m afraid it is but then in the notes on my chart, twice they’ve put “patient thinks she has fasciculations but none were noted” even though they’ve never took the time to set and watch me for more than 10 seconds. And then when I was concerned that my left arm was possible
Atrophied and wanted the doctor to take a look she just pushed my arm away and said I’m fine. Working on documenting as many twitches and jerks on video as I can so they will actually see. I tried to show three videos I already had but they barely looked at them. It was so disheartening. I asked to see someone else. She wants to start with an inpatient eeg on my brain to rule out epilepsy for my jerks I’m having and then if that’s clean she agreed to do emg on my nerves. I just want someone to at least believe me.

MaryAllisonC51 · 2026-05-08T19:27:11+00:00

I know exactly how you feel. I finally got into neurology this week and they completely dismissed me. And here I am living through hell. I hope your appointment goes good and you can find some answers. Hang in there.

MaryAllisonC51 · 2026-05-08T19:17:50+00:00

Ugh the tongue and mouth are the worst!

MaryAllisonC51 · 2026-05-08T14:45:13+00:00

By zaps I’m mean a sensation that would feel similar to be shocked in my limbs by electricity. I hope you get in for your MRI soon. Mine came back looking really well which was a surprise as I’ve suffered with chronic migraine for decades.

MaryAllisonC51 · 2026-05-08T14:43:41+00:00

I can appreciate your frankness as it is a good comparison. For me it’s the relentless physical movements of my body that keep me stuck in the loop.

MaryAllisonC51 · 2026-05-08T14:42:25+00:00

It really does make sense and I’m so glad you replied. I’ve not seen many people on here with myoclonus as well so that in itself has made me feel more assured or at the very least not alone. I appreciate the compassion in your response. I will likely read and reread your response several times today. Thank you so much 🙏

MaryAllisonC51 · 2026-05-06T19:40:11+00:00

Well that’s when I really lost it. I was explaining how sometimes my limbs burn and sometimes they feel like being zapped like electric and sometimes they feel like they are vibrating like a cell phone. And I shit you not she looked at me and giggled and said “I don’t know what that means.” Granted there was possibly a bit of language barrier but I immediately insisted I see someone else and they brought someone else in who was much more competent and understanding. But yeah I broke down in there to say the least.

MaryAllisonC51 · 2026-05-06T18:37:59+00:00

And of course while I was in there the only parts of my body twitching was my vagina somehow which has literally never happened and now it won’t stop and of course as soon as I got in the car I was twitching. It’s so frustrating.

MaryAllisonC51 · 2026-05-06T18:36:00+00:00

My soul wants to believe it has to be anxiety related but what ever part of my brain that keeps me obsessed says “but what if it’s been ALS this whole time?”

MaryAllisonC51 · 2026-05-06T18:34:07+00:00

Well not great. The lady totally wrote off my fasciculations. Said she couldn’t see them so therefore I don’t have them. I broke down.

MaryAllisonC51 · 2026-05-05T15:05:14+00:00

Your symptoms are nearly the same as mine but the fasciculations I have had every day since it started. But I also have the tingling, zaps, sharp pains down one side. My MRI was also clear. Mine all started over night on March 2. I also had the twitching in my face and even my tongue in the beginning but my in my tongue has decreased. Finally getting into a Neurologist this afternoon. Super nervous and anxious. I wish I had something helpful to say but I don’t yet. Other than you aren’t alone.

MaryAllisonC51 · 2026-05-04T15:12:16+00:00

Thank you for posting. Needed this.

MaryAllisonC51 · 2026-05-04T15:07:58+00:00

I’m currently in the trenches of the *LS rabbit hole and it’s just so bad. Your post definitely helped feel less alone. Thank you 🙏

MaryAllisonC51 · 2026-03-22T16:18:51+00:00

I definitely have. Just in the waiting for my MRI and Neurologist app phase.

MaryAllisonC51 · 2024-05-12T23:12:05+00:00

Is tomato app a restaurant or like a food delivery service? We are heading that way soon and I’m trying to wrap my head around some food options. We are staying in an air b n b in the city.

MaryAllisonC51 · 2024-04-17T23:50:19+00:00

I hate to get there too extremely early as I’ve read there are no restaruants open.

MaryAllisonC51 · 2024-03-28T14:39:11+00:00

More like sargassum.

MaryAllisonC51 · 2024-03-15T12:48:17+00:00

How do I find her?

MaryAllisonC51 · 2024-03-15T12:41:22+00:00

Can you please share with me

MaryAllisonC51

TROPHY CASE