Strange symptoms rapidly worsening -back pain, vibrating legs and body

This sounds very similar to what I’m experiencing. I was convinced it MS, but neurologists, based on MRI, does not. 5 months of living in pain or extreme discomfort on good days. About to get a spinal tap and I want to be sure they test for everything possible, so I have been doing research. Years ago I got genital herpes and after the original outbreak, I would get an outbreak only very occasionally usually during extremely stressful times. I never took anti-viral, because it would typically be gone in 3-5 days and happen maybe once every couple years. I bring this up because I think this has something to do with the hell storm of neurological attacks happening to me right now. I’ve found articles too that support.
While I find a lot of information here, I’ve yet to find anyone with my symptoms, but what you describe comes close. Hope you find some answers soon.

I can so relate! The crazy sensations throughout my whole body have kind of taken over my life. Thank you for the chart. It sort of says it all, unfortunately. It’s such a complex system. Sometimes I feel so helpless. Has anyone out there experienced a feeling like your torso (front and back) is in a constant state of spasm 24/7?? I feel like I’m wearing a corset made of wood. When it’s at its worst, I have to lie flat on my back for a bit of relief. I’ve experienced this for 3 years and none of my doctors have ever heard of it. Thank you for listening. This support group is totally new to me and I’m very appreciative that I stumbled across it. ❤️

I had similar symptoms and after seeing several neurologists who could not help me I found out that from a back surgeon that leaking annular tears ( had 3 ) can cause this problem. Had those taken care of and have had some relief.

Oh my god. Are you me lol? I have one of the exact same theories and even got prescribed antivirals b/c I had a borderline positive herpes titer. I've been having random flares of back pain in different parts of my back. When it first started it felt like a hot area or burning like inside of my spine in my lower back. I didn't really think much of it when it began the first couple of times but then it kept happening but now I regret it because of my current symptoms. I have noticed tiny little skin rashes in the area but they've never really looked like herpes lesions and were never painful. I wonder if I've been having herpes flares without major skin symptoms, if thats even possible. I never had a major outbreak that I can remember.

I am still semi convinced I have MS or CIDP or something but my MRIs didn't support a diagnosis of MS. I have an EMG scheduled for next Monday. It is terrifying because I KNOW something is majorly wrong and I'm so tired of waiting because it keeps getting worse and people around me are starting to notice because they can see me tremoring. I am getting annoyed and angry because I feel like at some point it should be considered serious enough to expedite these tests for a young person that could end up suffering from permanent neurologic sequelae. Every day that I have these symptoms and almost trip from a foot drop or feel like my legs are giving out from underneath me or feel like I'm losing my balance that I should go to the ER and beg for help but then I chicken out and don't go because I am embarrassed lol.

Sounds like SS to me n

Oh my god. Are you me lol? I have one of the exact same theories and even got prescribed antivirals b/c I had a borderline positive herpes titer. I've been having random flares of back pain in different parts of my back. When it first started it felt like a hot area or burning like inside of my spine in my lower back. I didn't really think much of it when it began the first couple of times but then it kept happening but now I regret it because of my current symptoms. I have noticed tiny little skin rashes in the area but they've never really looked like herpes lesions and were never painful. I wonder if I've been having herpes flares without major skin symptoms, if thats even possible. I never had a major outbreak that I can remember.

I am still semi convinced I have MS or CIDP or something but my MRIs didn't support a diagnosis of MS. I have an EMG scheduled for next Monday. It is terrifying because I KNOW something is majorly wrong and I'm so tired of waiting because it keeps getting worse and people around me are starting to notice because they can see me tremoring. I am getting annoyed and angry because I feel like at some point it should be considered serious enough to expedite these tests for a young person that could end up suffering from permanent neurologic sequelae. Every day that I have these symptoms and almost trip from a foot drop or feel like my legs are giving out from underneath me or feel like I'm losing my balance that I should go to the ER and beg for help but then I chicken out and don't go because I am embarrassed lol.

Hi,

I've made a post in another group but I am convinced that I may have a form of neuropathy, so I thought I would post here and see if anyone has any advice or has experienced similar symptoms.

I am in my late 20s and have been having strange symptoms for a few years that have been having a waxing and waning kind of pattern. The symptoms include tingling, whole body fasciculations, muscle tightness and spasms. Most recently for the past few months, I have been having terrible hot flashes with excessive sweating on the central areas of my face, terrible neck and back pain (tightness with sharp stabbing, burning areas of pains in random areas of my spine), and worse tingling/fasciculations/spasms. My muscles have started shaking when doing things such as if I squat down or lean my head on my arm, when this sort of thing never happened previously. When I sit down my entire lower body feels like it's vibrating. I haven't received a diagnosis, and I don't know what to do at the point as everything seems to be worsening and I'm at my wits end. I have had all sorts of testing and everything has come back normal. It is worsening so fast that I'm considering going to the ER but I know it would probably be a massive money sink without much benefit. Has anyone experienced anything similar or have any advice?

Oh my god. Are you me lol? I have one of the exact same theories and even got prescribed antivirals b/c I had a borderline positive herpes titer. I've been having random flares of back pain in different parts of my back. When it first started it felt like a hot area or burning like inside of my spine in my lower back. I didn't really think much of it when it began the first couple of times but then it kept happening but now I regret it because of my current symptoms. I have noticed tiny little skin rashes in the area but they've never really looked like herpes lesions and were never painful. I wonder if I've been having herpes flares without major skin symptoms, if thats even possible. I never had a major outbreak that I can remember.

I am still semi convinced I have MS or CIDP or something but my MRIs didn't support a diagnosis of MS. I have an EMG scheduled for next Monday. It is terrifying because I KNOW something is majorly wrong and I'm so tired of waiting because it keeps getting worse and people around me are starting to notice because they can see me tremoring. I am getting annoyed and angry because I feel like at some point it should be considered serious enough to expedite these tests for a young person that could end up suffering from permanent neurologic sequelae. Every day that I have these symptoms and almost trip from a foot drop or feel like my legs are giving out from underneath me or feel like I'm losing my balance that I should go to the ER and beg for help but then I chicken out and don't go because I am embarrassed lol.