PN Symptoms - New here!
Posted: Wed Dec 28, 2011 1:49 am
Hello everyone. I am a new member here, and I wanted to share my story, and perhaps obtain some advice on what I should do next. I’ll try to make this short and to the point. I will be very direct in my symptom descriptions, but I’m sure you are all used to it, so I’ll just assume no one will be offended. 
I am a 20 year old male, and I have had symptoms for about 3-4 years now.
When I was 16, out of the blue, I began to experience a very strange sensation in my perineum area and most strongly in my penis. I can’t exactly describe it, but it really stressed me out at the time. It went away after a couple of weeks, and things seemed fine. A month or so later, I began to detect a marked loss of sensation in my penis. It seemed very slight, barely detectable, but it was enough to get my attention. I didn’t know what to do about this, so I didn’t mention it to anyone, until about 10 months later during winter time, I began to experience a kind of dull feeling in my legs and rectal area. Not a strong loss of sensation, just a slowly developing dullness like when you hands get cold.
I couldn’t bring myself to mention any loss of sensation in my penis, but I did report to my parents that I was experience sensations issues in my perineum and in my legs. I did tell the doctors about the issues though.
I went to a family doctor, two neurologist, orthopedic doctor, acpucuturist, and a chiropractor. I had a great deal of blood work done (all normal), and three MRIs including my head, lower back, and lumbar-sacral (pretty sure that’s right) area. I also had a nerve conduction test, and a general physical checkup.
The MRIs showed nothing, besides very very small bulges on two discs in my mid-back that the orthopedic doctor said probably wasn’t any issue at all.
I went to all the doctors multiple times, and here’s how they turrned out:
* Neurologist 1 insisted it was a B12 issue, and no evidence could convince him otherwise.
* Neurologist 2 did a nerve conduction test which turned out normal, so he decided it was probably peripheral neuropathy, which my mother has.
* The chiropractor couldn’t find anything, but he did feel around my coccyx bone and told me that he thought it was a bit tight, but he couldn’t give my any information about where to go from there.
* The family doctor was by far the most helpful. I saw him several times over the years, but just this year he completed more blood work and a physical checkup on me, and told me that (I assume based on muscle response) that he could definitely detect a loss of sensation or a nerve issue of some kind in my penis/scrotum/perineum area. He suggested that I avoid sitting, sit on an inflated ring, and take hot baths on a ring of some kind. He had me try some anti-inflammation spray at the base of my tailbone, and he also told me that if I had no relief the above mentioned, that I could go back to him and he would send me to a nearby doctor who could give me nerve blocks (not quite sure what those are).
* The orthopedic doctor was unable to find anything that he could help with.
* The acupuncture did not help me, but the doctor told me that he thought my issue was Cauda Equina Syndrome.
Now to be clear, I went to these doctors multiple times over the years up to the present date, and nearly all of them saw my progress in symptoms.
My current symptoms are:
- Strong loss of sensation in my penis. No more than 15-20% sensation overall.
- Loss of sensation in scrotum. No more than 50% sensation.
- Loss of sensation in rectal and perineum area. No more than 70% sensation.
- Leakage/urine retention/sensations of a full bladder when it’s empty. Often after sitting for long periods (on rings, or cushions or whatever) I will find areas of wetness in my underwear, whether I haven’t gone to the bathroom in 10 minutes or 3 hours.
- Sexual dysfunction in the form of quickly disappearing erections, and a weird combination of high sensitivity and low sensitivity to any kind of sexual sensation.
- TERRIBLE dull feeling in my legs in the mornings when I wake up. Whether sleeping on my back, or my stomach or side, every morning (worse if I sat a lot before going to sleep) I wake up with a sluggish, dull, and just super super uncomfortable feeling (or lack therof) in my legs.
- Sluggish feeling in my legs after sitting for long periods or on very hard surfaces. Much more acutely on hard surfaces.
- Strongly decreased sensation of urine flow.
- Some balance issues.
- Some fairly minor difficult in starting urine flow.
- Can’t fully empty bladder easily.
- Strange “lines of cold/heat” going through my legs occasionally
The bladder symptoms only appeared this year. Everything else has progressed slowly but surely from age 16.
It’s funny how used to things you can get though. I would never have imagined I would have all these problems at only 20 years old. I do quite well though, I don’t have any real muscular issues that prevent normal daily functions.
I got laid-off recently, but I WAS working at a shipyard as an electrician, and I had no issues being on my feet all day, working at terrible angles for my back, lifting heavy loads, climbing ladders, and all that.
I am also a martial artist (for about 6 years, I’m a red belt), and I’ve had no real issues while sparring, or anything else. The only areas that I can detect some problems, are in the sensation of the location of my legs and feet while doing my Katas, or One-Steps, also some balance issues doing the previously mentioned, and for kicks. I’ve had times where I’ve had to sit on concrete floors for sometime before getting up to complete a Kata, and I’ve had some real issues with my legs feeling slow and having a hard time “feeling” what my feet are doing any stuff like that.
As I mentioned before though, I was laid-off recently, which means I don’t have any solid income, it also means I don’t have health insurance anymore. I am receiving unemployment, but almost all the money I made went to my family because my father left my family early this year (a good thing for us I might add. I know my future health is far more important than a lot of things though, and I also might be able to receive some help from family members.
To make a long story short, I need help and suggestions because these issues are not getting better. I will being going back to my family doctor soon to perhaps go see another doctor for nerve blocks.
To be clear. I don’t know if I have PN, PNE, or anything else. I have no clue, but these symptoms fit better than most other options. I don’t know what to do, and I need help, so any advice or suggestions or guidance would be great appreciate it.
Sorry for the long read! God bless.
-Alex
I am a 20 year old male, and I have had symptoms for about 3-4 years now.
When I was 16, out of the blue, I began to experience a very strange sensation in my perineum area and most strongly in my penis. I can’t exactly describe it, but it really stressed me out at the time. It went away after a couple of weeks, and things seemed fine. A month or so later, I began to detect a marked loss of sensation in my penis. It seemed very slight, barely detectable, but it was enough to get my attention. I didn’t know what to do about this, so I didn’t mention it to anyone, until about 10 months later during winter time, I began to experience a kind of dull feeling in my legs and rectal area. Not a strong loss of sensation, just a slowly developing dullness like when you hands get cold.
I couldn’t bring myself to mention any loss of sensation in my penis, but I did report to my parents that I was experience sensations issues in my perineum and in my legs. I did tell the doctors about the issues though.
I went to a family doctor, two neurologist, orthopedic doctor, acpucuturist, and a chiropractor. I had a great deal of blood work done (all normal), and three MRIs including my head, lower back, and lumbar-sacral (pretty sure that’s right) area. I also had a nerve conduction test, and a general physical checkup.
The MRIs showed nothing, besides very very small bulges on two discs in my mid-back that the orthopedic doctor said probably wasn’t any issue at all.
I went to all the doctors multiple times, and here’s how they turrned out:
* Neurologist 1 insisted it was a B12 issue, and no evidence could convince him otherwise.
* Neurologist 2 did a nerve conduction test which turned out normal, so he decided it was probably peripheral neuropathy, which my mother has.
* The chiropractor couldn’t find anything, but he did feel around my coccyx bone and told me that he thought it was a bit tight, but he couldn’t give my any information about where to go from there.
* The family doctor was by far the most helpful. I saw him several times over the years, but just this year he completed more blood work and a physical checkup on me, and told me that (I assume based on muscle response) that he could definitely detect a loss of sensation or a nerve issue of some kind in my penis/scrotum/perineum area. He suggested that I avoid sitting, sit on an inflated ring, and take hot baths on a ring of some kind. He had me try some anti-inflammation spray at the base of my tailbone, and he also told me that if I had no relief the above mentioned, that I could go back to him and he would send me to a nearby doctor who could give me nerve blocks (not quite sure what those are).
* The orthopedic doctor was unable to find anything that he could help with.
* The acupuncture did not help me, but the doctor told me that he thought my issue was Cauda Equina Syndrome.
Now to be clear, I went to these doctors multiple times over the years up to the present date, and nearly all of them saw my progress in symptoms.
My current symptoms are:
- Strong loss of sensation in my penis. No more than 15-20% sensation overall.
- Loss of sensation in scrotum. No more than 50% sensation.
- Loss of sensation in rectal and perineum area. No more than 70% sensation.
- Leakage/urine retention/sensations of a full bladder when it’s empty. Often after sitting for long periods (on rings, or cushions or whatever) I will find areas of wetness in my underwear, whether I haven’t gone to the bathroom in 10 minutes or 3 hours.
- Sexual dysfunction in the form of quickly disappearing erections, and a weird combination of high sensitivity and low sensitivity to any kind of sexual sensation.
- TERRIBLE dull feeling in my legs in the mornings when I wake up. Whether sleeping on my back, or my stomach or side, every morning (worse if I sat a lot before going to sleep) I wake up with a sluggish, dull, and just super super uncomfortable feeling (or lack therof) in my legs.
- Sluggish feeling in my legs after sitting for long periods or on very hard surfaces. Much more acutely on hard surfaces.
- Strongly decreased sensation of urine flow.
- Some balance issues.
- Some fairly minor difficult in starting urine flow.
- Can’t fully empty bladder easily.
- Strange “lines of cold/heat” going through my legs occasionally
The bladder symptoms only appeared this year. Everything else has progressed slowly but surely from age 16.
It’s funny how used to things you can get though. I would never have imagined I would have all these problems at only 20 years old. I do quite well though, I don’t have any real muscular issues that prevent normal daily functions.
I got laid-off recently, but I WAS working at a shipyard as an electrician, and I had no issues being on my feet all day, working at terrible angles for my back, lifting heavy loads, climbing ladders, and all that.
I am also a martial artist (for about 6 years, I’m a red belt), and I’ve had no real issues while sparring, or anything else. The only areas that I can detect some problems, are in the sensation of the location of my legs and feet while doing my Katas, or One-Steps, also some balance issues doing the previously mentioned, and for kicks. I’ve had times where I’ve had to sit on concrete floors for sometime before getting up to complete a Kata, and I’ve had some real issues with my legs feeling slow and having a hard time “feeling” what my feet are doing any stuff like that.
As I mentioned before though, I was laid-off recently, which means I don’t have any solid income, it also means I don’t have health insurance anymore. I am receiving unemployment, but almost all the money I made went to my family because my father left my family early this year (a good thing for us I might add. I know my future health is far more important than a lot of things though, and I also might be able to receive some help from family members.
To make a long story short, I need help and suggestions because these issues are not getting better. I will being going back to my family doctor soon to perhaps go see another doctor for nerve blocks.
To be clear. I don’t know if I have PN, PNE, or anything else. I have no clue, but these symptoms fit better than most other options. I don’t know what to do, and I need help, so any advice or suggestions or guidance would be great appreciate it.
Sorry for the long read! God bless.
-Alex