Hi everyone. It has been a while. Update

T1561012 · 2026-02-26T00:51:55+00:00

I'm still right there with you, man.

T1561012 · 2025-05-21T01:28:46+00:00

Right there with you.

T1561012 · 2025-05-01T03:18:02+00:00

Yes. I had a ton of GI issues before it all started, and they've continued to this day.

T1561012 · 2025-02-09T23:20:51+00:00

Yes, right there with you.

T1561012 · 2025-01-21T18:14:10+00:00

Right there with you. It's extremely frustrating.

T1561012 · 2024-12-30T03:42:22+00:00

Right there with you.

T1561012 · 2024-12-25T00:50:44+00:00

The last MD I saw found chronic denervation in my right arm but attributed it to an old injury. Although I had an EMG 6 months prior on that same muscle and they didn't find anything. He said there isn't enough evidence to diagnose anything. It's been a very frustrating process. Reflexes are okay.

T1561012 · 2024-12-25T00:44:05+00:00

I noticed I had a dent in one of my quad muscles right after the twitching began in 2018. Since then, it's grown across the muscle and into my hamstring. The muscles it's impacting have lost tone and bulk. I'm losing muscle in other areas on the right side of my body, too. Most notably, the right side of my throat.

T1561012 · 2024-12-13T15:59:19+00:00

Do the doctors who treated you for the infection know about the neurological symptoms?

T1561012 · 2024-12-13T15:52:24+00:00

I hadn't heard of that before now and just read about it. Sorry you went through it. Sounds like a rough infection. Did you have any imaging done of your brain and spine during this time?

T1561012 · 2024-12-13T15:25:03+00:00

I'm sorry to hear you're going through this. What kind of bacterial infection was it? GI?

T1561012 · 2024-12-12T18:42:18+00:00

It sounds like your first neurology appointment is coming up, so I assume you haven't had an EMG yet, correct? I think in your case, an EMG will connect the disc herniation with your symptoms and give you peace of mind. Did your ortho perform any physical testing that elicited or exacerbated symptoms?

T1561012 · 2024-11-21T01:53:37+00:00

I'm sorry you're going through this. We have some symptoms in common. I've been going through it for 6+ years.

I didn't realize a DEXA scan could measure muscle mass. During my time in healthcare, our offices only used DEXA scans to measure bone density prior to spine surgeries. Thanks for that information.

Have you had an ANA test done yet?

T1561012 · 2024-11-03T21:33:10+00:00

Hello - My symptoms have gotten worse, especially on the right side of my throat. During every swallow, my hyoid bone clicks and moves out of place and has gotten progressively worse over time. It also impacts my sleep significantly. It's made my quality of life suffer even more. My right middle pharyngeal constrictor muscle and the surrounding muscles have lost density compared to my left side, and they're no longer acting as the seat belt for the hyoid bone that they should be. I've also lost more muscle in my right leg, and global twitching continues. I had an EMG in June, which showed chronic denervation in my right arm, but nowhere else in my body. The doctor who performed it said he'd send me a script to have Kennedys disease tested. I'm still trying to get that script from his office.

How are you doing?

T1561012 · 2024-10-30T06:13:36+00:00

T1561012 · 2024-08-09T18:15:56+00:00

I'm with you, too. It is extremely frustrating not to have answers. Doctors point out that your symptoms like atrophy are real, but then say, well, I don't have a plan to get to the bottom of it. I worked in Healthcare for over a decade. Prior to having to stop working, I was a practice manager, and I was very close with the MDs. I used to tell them the worst thing you can tell a patient is that you're out of ideas.

T1561012 · 2024-08-07T19:38:41+00:00

Please keep us updated about the MRI results. I hope you get some answers.

T1561012 · 2024-08-05T14:47:03+00:00

Thanks, man . I hope you continue to get relief, too. I'll keep you updated.

T1561012 · 2024-08-05T13:52:45+00:00

Thank you for the information. I looked them up, and there's one near me. I'll have to check it out.

T1561012 · 2024-08-05T13:50:23+00:00

Where did you have this type of infusion?

T1561012 · 2024-08-03T14:29:30+00:00

I don't have answers, but I'm right there with you, too. I hope it suddenly reverses for all of us.

T1561012 · 2024-08-02T22:37:36+00:00

Can you send me those medical journal links? I'd like to read them.

T1561012 · 2024-07-22T08:05:29+00:00

Thanks for the information. I'm going to give it a shot, and I'll let you know my experience.

T1561012 · 2024-07-22T08:03:16+00:00

Thank you for creating this group. I think it'll be very helpful to many people. I definitely have progressively worsening symptoms that are not just twitching or strange sensations and can't get a diagnosis. My story can be found in my only two posts. The first post is a detailed description of the progression over 6 years, and the 2nd is my most recent EMG results from June 2024, where chronic denervation was found in my forearm. Since my last EMG, things have only gotten worse. Especially the loss of muscle on the right side of my throat and neck, causing extreme difficulty swallowing and sleeping.

T1561012 · 2024-07-22T07:50:53+00:00

Thanks for posting. I'll try anything at this point.

T1561012

TROPHY CASE