Health Organization for Pudendal Education

Hello Everyone,

Having a really worrisome symptom this week. I am having a hard time walking, i can feel my legs, but moving them is extremely challenging. When i walk it's hard to really see im struggling, but it's something i definitely feel.

Has anyone else had any issues like this? I was checked for MS over a year ago. Had an MRI w/o contrast. Didn't see anything.

This is really freaking me out

What meds are you on? Any muscle relaxants?

I'd be heading to the GP pretty fast if that were me.

I hope you can get this checked out soon.

Hi Joe,

joeparz wrote: Had an MRI w/o contrast. Didn't see anything.

Is this the most recent 3T MRI you're referring to, or an older one? You had mentioned some type of spinal pathology in one of your other posts. It's possible you've got a compression of the sciatic nerve. Have you had an EMG of your lower extremities?

Hello


My GP thinks i am nuts and basically won't do anything.

The MRI i am talking about is the spinal one, and that was normal. no abnormalities same for the xray.

The 3T MRI was also normal, so i am totally at a loss of what the hell is happening to me.

I am on no medications at all.

Oh, Joe ...
I'm so sorry, hon. I believe you that something is wrong. You just haven't been able to get to the right place, yet. Is there any chance at all that you could get an appointment with Dr. Oaklander? She may not be able to treat you, but I do believe she can at least point you in the right direction. I would especially want her to review your imaging.
I stand to be corrected, but ... the last I heard she was booking EIGHT months out.
I understand how frustrated you're feeling; all the while continuing to decline. Please don't give up hope just yet, though.

joeparz wrote:My GP thinks i am nuts and basically won't do anything.

Well, then - it's time to move on, Joe.

Kind regards,
Karyn

Have you been given a neurological exam? Something is going on. Your GP should have been ale to do that, at least the old reflex test. A neurologist can do a more thorough one, but my understanding is that Dr. Oaklander is hard to see. I've also been given the name Didier Cros, but I have never seen him.

Hey there. I would agree you need to see a neurologist.
Do some research into these two things and take the info to your dr.
Myasthenia Gravis and Mitochondrial Myopathy .
These are Mia diagnosed a lot! This could be your contributing factor
Good luck with your quest
Mom

Update

Well i recently started sitting again, as my lower back, knees, and heels were killing me.

I am just continuing to get worse. Seen a few more doctors. And my PT came up with these issues

Leg length

Hip is rotated/tilted

L1 vertebrae is stuck in flexion

Coccyx is severely tucked in

Seen a pudendal nerve specialist who works with my PT who did a bunch of tests on me and said i don't have PNE. SHe pressed on a bunch of areas and made me do weird stretches, but that didn't cause any pain.

I seen a neurologist who is trying to reassure me this is all caused by anxiety, all he did was a physical exam, no emg's no nothing for the nerves in my legs. Just the typical, can you press your leg up against my hands, okay great.

PCP also wants to address my anxiety and is running out of ideas.

Had a sleep study that revealed i woke up more than 80 times in my sleep.

Current Symptoms

Severe Anxiety and depression

Legs are weak

Severe coccyx pain, when i sit , stand, or even lay down(even on my stomach)

Weird nerve sensations in my glutes, it's pain but it almost feels itchy if that makes any sense, almost a good feeling. Radiates down my leg, or so i think

Right side of the head of my penis is always in pain/hypersensitive, can't even walk without either having pain or an uncomfortable sexual stimulation feeling

Erections are all over the place. Been using viagra, and sometimes i am rock hard and could last for hours, and others its semi hard and i can last 15 minutes.

Can't sit for too long or my glutes and perineum get sore, the glutes burn.

Frequent urination/urine retention, bladder is all over the place. Sometimes i pee fine and feel relieved, and others the stream is weak and i still feel a full bladder

it is driving me mad that i cannot find a comfortable spot, i am in pain when i stand, i am in pain when i sit, and i am in pain when i lay down. The only relief i get is the first hour i am awake.


I am seeing Dr. Conway this friday, but does anyone know what a typical first visit with him is like?

I am also seeing another neurologist tomorrow who will hopefully do some kind of testing besides, "Press your knees up against my hand"

My PT is working with me to correct the leg length and vertebrae, she is also doing pelvic floor internal work as well as trying to free my coccyx.


Just thought i would update, its been a few months.

Hope everyone else is well and is feeling better.

I hope PT can help out, it would seem so given the issues especially if it is not PNE. Glad you are going to Dr Conway, it always gives people a better understanding of thear situation if they see a PN specialist. Anxiety and depression can be counterproductive and it is good to hear your doctor will work on that. Sometimes they just do not have the extra knowledge but can certainly help with what they know. Take care and I look forward to hearing some treatment comes to you and starts to relieve the pain.
Janet