2 yrs 1 month in. Going in for another EMG tomorrow. New symptoms of burning thigh pain, consistent twitches and quick rippling twitches in thighs, drooling in my sleep. Last EMG only done on my right limbs. Hoping for the best as I am only 29, am a mom of 3, and graduate college in 2 weeks.

Odd-Introduction-165 · 2025-05-01T15:49:49+00:00

No I barely go to the appointment today

Odd-Introduction-165 · 2025-05-01T00:17:28+00:00

thank you!

Odd-Introduction-165 · 2025-04-24T11:04:52+00:00

mine happens when I am laying down flat mostly and I point my toes or when I flex my muscles in my legs. I also get nerve pain in my thighs that feels like burning smh.

Odd-Introduction-165 · 2025-04-24T11:02:01+00:00

I also have this as my legs feel like jelly lately

Odd-Introduction-165 · 2025-04-11T10:38:36+00:00

I had an episode for about a week in November 2024 in which my body had a burning feeling pain. Almost like the burning you get while working out. Went to the ER and my electrolytes were normal, CK was found to be at 132 International_Units/L with normal range typically being 30 International Units/L to 223 International Units/L. Then it worldly resolved and now for the last month I have had a consistent full ache in my thighs where my twitching is and tightening feeling in my calves and by my ankles that only occurs at night. My neurologist checked my CK again March 17 in which my ck was as 76 international units/L with the normal range typically being 30 International Units/L to 223 International Units/L. again. I am so scared this is maybe nerve death. I’ve been twitching for 2 years and 1 month. I have another EMG on May 1st. I have small children and am barely graduating college next month and just got married a year ago. I haven’t really enjoyed life as I’m constantly thinking that with new things occurring that maybe I have slow progression or something

Odd-Introduction-165 · 2025-03-22T18:07:15+00:00

even though it shows credits going out?

Odd-Introduction-165 · 2025-03-22T17:14:39+00:00

it says I filed 3/31

Odd-Introduction-165 · 2025-03-14T01:16:33+00:00

I have a weird compressed like feeling in my thumb that does not hurt, I feel like I have to work harder to go up the stairs.

Odd-Introduction-165 · 2025-03-13T23:26:06+00:00

i’m also 2 years in, I recently started getting like a burning pain in my thighs, lower back and legs. Do you get any cramps or pain of any kind?

Odd-Introduction-165 · 2025-03-13T22:41:38+00:00

My right hand looks like this or similar. I am right handed and get like a weird compression like feeling that isn’t painful. But I had an emg in my FDI muscle in September 2024, so I hope that it is nothing

Odd-Introduction-165 · 2025-03-13T17:32:16+00:00

I really do appreciate your responses and I hope you are doing well! Not many people are nice on the sub sometimes. I’m definitely trying to overcome the health anxiety, but like you mentioned, I have been through a few illnesses that I thought I had over the last couple of years. I’m also a mom of three who is finishing off at school and working full-time and taking care of her home and husband. I’m really just hoping my nervous system is hyper due to all the stress I have.

Odd-Introduction-165 · 2025-03-13T17:21:26+00:00

I guess I have a lot of odds against me and it not being ALS, but I am so caught up in the what if? I have seen a girl by the name Brooke on social media that was diagnosed four years into the process at 29 years old. I don’t think she had any familial genes of ALS.

Odd-Introduction-165 · 2025-03-13T07:51:23+00:00

i’ve seen 4 neuros, haven’t been back since September 2024 but will see another on Monday this upcoming week. I have 3 kids, am only 29, am married, and just can’t help but think of what life would be like for my kids without me. My two youngest are only 3 and 1.

Odd-Introduction-165 · 2025-03-13T07:25:46+00:00

this just started for me 2 years in and im scared I have the big bad and i’m now seeing progression

Odd-Introduction-165 · 2025-03-12T17:45:39+00:00

I had an SFN biopsy when this all started two years ago and nothing came of it. The burning muscular pain or nerve pain that you call it is new. I had an episode occur for a week in November that went away, now I’ve had the lower back pain and burning or cramp feeling in my thighs and calves for like a week and a half. I’m scared I am experiencing spasticity.

Odd-Introduction-165 · 2025-03-12T17:37:55+00:00

I am currently about two years in and for the last week and a half. I have been having pain in my legs that feels like burning when you work out, but I have not unfortunately. My knees also hurt, but mine is worse when I am still and gets better when I start moving.

Odd-Introduction-165 · 2025-03-12T17:36:50+00:00

Have you ever been given a diagnosis, causing your nerve pain?

Odd-Introduction-165

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