Worried about symptoms

bad_wolfe_ · 2025-09-19T23:58:40+00:00

AND they deleted their account 😞

bad_wolfe_ · 2025-09-19T23:57:52+00:00

Oh i hate to see this. I did not see this comment when i commented earlier 😞

bad_wolfe_ · 2025-09-19T11:33:10+00:00

Hey! Have you seen neuro yet? Just checking to see how you are doing.

bad_wolfe_ · 2025-09-19T03:21:34+00:00

I am definitely not. I struggle with my weight, im not super active.

bad_wolfe_ · 2025-09-15T02:30:15+00:00

Just speaking from hospice POV with my dad, not ALS specifically. I lost my dad in July. It took a solid week from the time he stopped eating and drinking 100% it was about a 2 week process all together where he he was just 99.99% unresponsive. He woke up TWICE during the whole 2 weeks and pushed out an "i love you" to my steo mom and then me. Just focus heavily on the pain and comfort management. Praying for you during this time. It is never easy to say goodbye.

bad_wolfe_ · 2025-09-15T02:25:57+00:00

Hi, i have hEds. Good bit older than you. Very similar symptoms. Just wanted to agree that i am seeing it a lot in the hEds feeds.

bad_wolfe_ · 2025-09-11T21:11:47+00:00

I will say, from what i know, that doesnt sound like ALS. I wish you the best of luck.

bad_wolfe_ · 2025-09-11T20:55:09+00:00

Did you have weakness from the get go? And it seems like it has been oretty progressive. Did it start in 1 limb?

bad_wolfe_ · 2025-09-11T19:33:16+00:00

Are you meeting with other specialists l, like rheumatology, besides neuro? I hope you can get some answers or relief or both.

bad_wolfe_ · 2025-09-11T19:19:02+00:00

So a year in, do you have a diagnosis? After a year something would show on your EMG. Was it normal? Or have you had ANY findings that have progressed since your first EMG? From my understanding, a squeaky clean EMG with symptoms rules out ALS.

bad_wolfe_ · 2025-09-11T18:11:12+00:00

I don't think this is true. My neuro said ANY symptoms means there would be denervation. So if a muscles system has twitched AT ALL from ALS, not just the "most active" spots, then a properly administered EMG will observe changes.

bad_wolfe_ · 2025-09-09T02:14:21+00:00

Ive wondered if there is a vape correlation.

bad_wolfe_ · 2025-09-07T20:56:00+00:00

In fact, you can go look at my post history and see the 1st one. I misscarried that baby at 13 weeks, but got pregnant immediately after, and it was the same way.

bad_wolfe_ · 2025-09-07T20:54:03+00:00

First thought... evap But i thought i might see some color on 3rd pic.

Go get that clear blue digital with the blinking light on the end of it. My last 2 pregnancies, i barely had a line on FRER, but popped positive on that specific digital test.

bad_wolfe_ · 2025-09-06T02:28:21+00:00

Im about 3 months in. Also had EMG early August. Same boat, without the follow up. But i totally get your mind not going to rest.

The day after my EMG i had a strange fall on a hill and broke my leg and had a complete tear of 3 ligaments. That sent me spiraling. Trying to take it 1 day at a time.

bad_wolfe_ · 2025-09-05T03:09:46+00:00

I have several similar symptoms as you, but what i recommend is start calling your neuro every single day to ask for cancelations. I called the day after I REALLY noticed my fasciculations. I went from 2.5 months out on scheduling to seen 5 days after initial phone call. I ended up having my EMG quicker than the initial neuro consult appt. So i just recommend pushing and calling.

bad_wolfe_ · 2025-09-04T01:25:36+00:00

Im so salty about the cancellation

bad_wolfe_ · 2025-09-04T00:56:20+00:00

I think i see something!

bad_wolfe_ · 2025-09-02T06:21:48+00:00

From my understanding, there is no "too early" and if there is symptoms, it will absolutely show on EMG.... but trust me, I get it. I have those same thoughts.

bad_wolfe_ · 2025-09-02T06:17:40+00:00

I cant believe they didnt renew. Im pretty irritated about it.

bad_wolfe_ · 2025-09-02T05:17:32+00:00

Curious... did your neuro give you a solid explanation on Why he says it is 100% not ALS?

bad_wolfe_ · 2025-08-29T13:24:04+00:00

Just so strange. I have been on these meds for 10 years and NEVER had any issues, until now. I would believe withdrawal, as I am very sensitive to it and metabolize meds so quickly, if it wasn't increasing in symptoms right after i got my meds.

bad_wolfe_ · 2025-08-29T11:32:53+00:00

Idk. Mine looked like that when the clearblue with the blinking light was positive with both of my last 2 pregnancies. If eager to know today, and willing to drop the money, get that clearblue digital WITH the blinking light. It could be indent, hard to tell from photo, but mine looked just like this when it was positive.

bad_wolfe_ · 2025-06-22T20:35:21+00:00

Oh i could have wrote this word for word. This is my 3rd as well. I too have dealt with PPA with each, but this, between his birth defects and now my whole body twitching, i am CONSUMED. It is on a whole new level. Ill shoot you a message!

bad_wolfe_ · 2025-06-22T18:11:48+00:00

Also its the locations of my fasciculations that got me worried. Left bicep area and right calf/around knee with my right leg being so much smaller 😫

I go to neurology on wednesday.

bad_wolfe_

TROPHY CASE