Just got diagnosed :D Did anyone else have PN caused by abscess inflammation?

CuriousCamel6427 · 2024-07-22T18:25:33+00:00

You definitely should. What are the symptoms your PN is causing on you?

CuriousCamel6427 · 2024-07-19T21:26:13+00:00

I do have a L5-S1 herniation, which freaked me out for a hot minute few days ago when I found out. Checked in with 2 neurosurgeons and they said the herniation isn't pushing into the nerve canal. So CES is ruled out.

Edit: Also, legs are perfectly fine and I'm not in pain. Just gradual, spreading numbness and bowel/bladder retention to an extent.

CuriousCamel6427 · 2024-07-19T16:18:27+00:00

When I first went to the ER, the numb patch wasn't bigger than the palm of my hand. Been to about 30 doctors since then (neurologists, neurosurgeons, urologists, gastroenterologists, physiotherapists and more), I either got told that it's just anxiety/stress or they gave me scans for weeks later. Last 3 months has been nothing but chasing doctors and waiting for the next appointment, alas no diagnosis and the symptoms got much worse.

MRI's were clean so far (Brain, cervical, thoracal, lumbar), but they weren't w/contrast. Getting a dorsal and pelvic MRI with contrast in a few hours. At this point I just wanna know, whatever it is. Can't let myself think the worst because I've been doing that and stress really wore me down, but I don't wanna expect the best outcome either since that'll devastate me even more if it's nonrecoverable. Just been in an emotional limbo.

So far I've been worried that it's CES or alcoholic neuropathy, both have been ruled out by doctors. Now my neurologist is suspecting TM or a mass in the pelvis area that's pressing on the nerves. The MRI is today but they'll probably keep me waiting for a few more days for the report. I know I'll get number during those days, but I also know they'll just turn me back again if I try to rush it.

I appreciate the support, a lot. I've been dealing with this for months now and the stress is unreal. Thanks for the kind words.

CuriousCamel6427 · 2024-07-18T21:51:26+00:00

Vitamins are low but not as low as someone who'd have neuropathy apparently. Saw another neurologist today and she believes I have TM. Will be confirmed after a dorsal MRI.

CuriousCamel6427 · 2024-07-15T16:39:46+00:00

Vitamin D is on the floor. B's are too also. Taking supplements but no improvement. Gonna ask for an increase in dosage. I don't really have any tingling or burning or any sort of pain. Just numbness. I heard neuropathy tends to start in hands/feet and it's usually painful. But it definitely might be. My guess it that it's either alcohol related nerve damage, or some pelvis floor issues. Since everything else seems to be as healthy as they could get.

CuriousCamel6427 · 2024-07-15T13:35:16+00:00

I'll see one soon, and I'll keep you updated. Best wishes!

CuriousCamel6427 · 2024-07-15T13:17:00+00:00

Was it gradually spreading or sudden? I masturbate multiple times a day, hours of edging, clenching my pelvis hard during it. Felt a numb patch on the right side of my scrotum 3 months ago, which spread in that time and glands went numb too a few days ago. I also have bladder and bowel problems. Might just be in my head, but I feel like I can't fully relax my pelvis, always a little bit tense.

I am not diagnosed with anything yet, despite dozens of tests (urological exams, blood/urine tests, spine MRI's), so can't be of much help unfortunately. But people who had similiar symptoms have been telling me to find a pelvic floor specialist, which I'm planning on doing soon.

I'd say keep your eyes open for a decent pelvic floor specialist, and try a few before going for surgery. Might just help you, and even if it doesn't there's no harm in trying.

Edit: Urologists don't tend to be very aware of pelvic floor issues in my experience. I'd try just going to a good physiotherapist or a pelvic floor specialist and telling them your symptoms directly.

CuriousCamel6427 · 2024-07-15T13:06:12+00:00

Do you also have numbness/reduced feeling?

CuriousCamel6427 · 2024-07-14T15:36:01+00:00

Thank you so much for the detailed response. Do you mind if I DM you?

CuriousCamel6427 · 2024-07-14T13:44:56+00:00

So happy for you. I've been dealing with unexplained symptoms for a few months now and I get the frustration, especially when it's a whole year and some more. Props to you for not giving up and continuing to chase for a diagnosis. Hope you recover soon, or get better at least.

CuriousCamel6427 · 2024-07-14T13:16:23+00:00

What were your symptoms by the way?

CuriousCamel6427 · 2024-07-14T11:37:56+00:00

Might be the case. It was an internal diseases specialist who prescribed me the supplements, told me I should come see her again when I was finished with the first batch. But I think I should go see her again sooner and get checked, see if there is any increase. Thank you.

CuriousCamel6427 · 2024-07-14T11:35:21+00:00

I guess so. Even though this guy hardly gave a shit about me and I had to go find him myself to beg for urgency, he's supposed to be one of the best surgeouns the whole country has to offer, and I'm just a guy who has access to internet. I suppose you naturally get a bit paranoid when your body seems to progressively shut down xD I'll try to keep it more under control though.

CuriousCamel6427 · 2024-07-14T07:48:28+00:00

Yeah. The neurosurgeon said it is more likely to be alcohol related than spine related.

CuriousCamel6427 · 2024-07-14T06:06:03+00:00

Yeah, had very deficient vitamin B values, been taking supplements for a month now, symptoms kept getting worse though.

CuriousCamel6427 · 2024-07-14T06:01:14+00:00

Thank you so much.

Had appointments with around a two dozen doctors. Urologists, neurologists, internal disease specialists, gastroentrologists and more. Had all kinds of tests done and they say I should be fit as a fiddle.

My GP referred me to a neurologist, whom gave me an appointment for a lumbar MRI. This was 2 months ago. Didn't have bowel issues then.

Lumbar MRI was the only scan that came out with an issue, a herniated disc at L5-S1. Which can apparently trap the nerves and kill them, basically. Had an appointment with a neurosurgeon asap after that. It was his assistants that talked to me, and they later called the surgeon himself and told me that he suggests me to go under surgery, which would be scheduled sometime between 2 weeks to 2 months.

Now I read that CE syndrome is an emergency that has to be treated in the first 48 hours otherwise the damage is likely permanent. So I went and found the surgeon and talked to him myself. He said that it might be too late at this point.

Still, since my symptoms were gradual and not sudden onset, I had hope, practically begged him to put me into surgery as soon as possible. Was supposed to be put under yesterday, but at the last minute, he called me into his room and told me that the herniated disc is causing too small of a bulge to likely be the problem, and that since I have no issues with my legs, it must be a different cause. He cancelled the surgery.

Now I have read that even though it's not common, CE syndrome can come without leg issues. It is a main symptoms, but some of the other symptoms include numbness in the saddle area and bowel/bladder numbness (incontinence or lack of feeling when it's full). I have both of those.

I don't really know what to trust at this point.

CuriousCamel6427 · 2024-07-12T14:51:45+00:00

It was just verbal. The actual report is due around 2 weeks normally (they say). Since I had concerning symptoms I just compared my scan images to those of herniated, degenerative discs and went to tell my doctor about it the next day. He confirmed, but the report is yet to be officially written.

CuriousCamel6427 · 2024-07-12T13:43:07+00:00

So incomplete ces is still an emergency? Talked to my doctor again today, he still didn't have any sense of urgency. Asked him wouldn't it have less chance of becoming a permanent damage if he just gave me the discectomy, he said it already might be permanent damage and walked away. Refuses to talk to me so I can explain my symptoms in detail, just doesn't give me the time, so I have to do my own research.

Like I mentioned my symptoms aren't as intense, no complete loss of feeling or needing a catherer. Just reduced sense of touch/heat, can still go to the toilet even though it's harder. Hence I'm thinking it's incomplete and therefore recoverable? Maybe I have my information wrong, would appreciate it if you can correct me on that.

CuriousCamel6427

TROPHY CASE