I have pudendal nerve damage

So I went to Dr. Goldstein and he did Quantative Sensory Testing and I have pudendal nerve damage. He thinks I have a spinal cord problem from PSSD. Getting MRIs. He showed me the functional MRI. He confirmed that’s it’s basically brain damage. My neuropsychologist is writing a research paper on me. She thinks the amgydala, hypothalmus, hippocampus, olfactory bulb, pituitary gland, and something else are involved. And dopamine is inhibited. My prolactin is high as well. But she’s one of the Top Docs winners in NJ so it’ll hopefully be published and get the word out.
Anyaway I can’t sleep naturally at all also so now have to knock myself out with high doses of Halcion and Lyrica? This can’t be good. But I’m losing hope. I’m a moron now. No focus, no emotions, no imagination, no taste, no smell, numbness everywhere, don’t get tired or hungry, dick is looking sorry, skin is dry, it’s like Multiple Sclerosis especially in my case. One of Goldstein’s nurses pointed out the similarities. Oh no sleep unless I use ridiculously high doses of benzos. I used to be addicted to these too. Shit genes! Shit OCD, Accutane, IBD from Accutane, Cipro nerve damage, addiction to pills to treat damage and illness, SSRIs and now brain damage from them. I don’t know how much more I can take. I have a nitrogen ready when I need but I’m gonna give it a couple years maybe. Follow some of Goldstein’s protocols and see if he can help my penile scarring with Platlet Rich Plasma Therapy and my spinal cord may need a procedure. I’m actually getting sleepy finally. Hadn’t slept in days but I may tonight. Sorry for the rant but I’ve been hit hard.

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Sorry to hear his man. What was the evidence of brain damage that they found in the mri? Can you be more specific? I know this doesn’t make things better but I have the same symtoms as you. My vision is also fucked. Dizzy eyes 24/7

He can’t diagnose you if you haven’t even done any imaging, especially an MRI. You had a sensory test done. You can’t just tell a person you have brain damage off of that

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Hi all, I have a EMNG of the sphincter coming up in 2 weeks? I was wondering if anyone else has had this test done? I also have a functional MRI coming up. When you google EMG of sphincter it says its very useful in diagnosing Multiple System Atrophy. I know it sounds like a long shot but we all have a lot of symptoms of autonomic dysfunction. Autonomic dysfunction is stuff that is supposed to be automatic the body does’t do well. So automatic is blood pressure, sweating, body odor, erectile function, arousal, tear production…

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We need functional MRIs which are only done in research settings. He showed me a functional MRI of a PFS guy and in response to sexual and emotional stimuli our brains look like a mess. He’s sending me for a couple MRsI on the spine too. I mean he didn’t want to say brain damage but I asked point blank if this is some kind of brain damage and he said it was. I’m sure the worst of our cases probably knew that. Not structural brain damage like we’ve been shot in the head. But instead of a gun a blunt tool like an SSRI got in my brain tissue and basically destroyed it. He also said that it might be receptor issue. Like we could take take all the dopamine agonists or hormones that we want but it won’t be received, which I know many people on here know already. That’s why he wants me to take these things for a little while to see if maybe it jump starts something in the brain. I remain skeptical though. At least I slept last night. No dreams as usual. Cause I’m brain damaged. Can’t believe it’s even possible.

I had an EMG but they just did legs and arms. I wanted them to do pudendal nerve. But an EMG only does large fiber nerves. Most of us have problems with small fiber nerves. That’s why QST is a better test. It’s possible that these drugs did some large fiber damage but you also may show nothing. And sometimes be told it’s all in your head.

Receptor is much more likely than tissue damage IMO. Many of us had MRIs and none showed tissue damage (I had two MRIs and an MRA). The term brain damage is tricky because it doesn’t always mean permanent. When we talk about other parts of our body we describe it as being “hurt” which has a more temporary sound to it. I guess anytime an organ isn’t working properly you could call it damage. Also the brain is plastic. You hear many many stories of people being so severvely brain damaged that they can’t even walk or talk, but they make significant recoveries.

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I had a regular MRI too. But I knew that wouldn’t show. Yeah it seems to be receptor and functional damage. We have to hope for neuroplasticity. Goldstein was honest in saying that I won’t ever be who I was but he will try to get me back to being able to live a decent life. We’ll see.

Not sure how can definitively say you will not be who you were, not sure how he can say that.

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Because damage to central nervous system is largely irreversible in a lot of diseases…

Makes sense but would not explain recovery stories. Unless this doctor was able to evaluate the specific damage (obviously he can’t) then not sure how he can say something so matter of fact

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Yes, I confirm. Many of our symptoms are equal to multiple sclerosis. Also I will get an MRI. My friend, being strong, I am in the same boat, I have the whole body numb, I do not feel tastes, altered smells, my dick is gone and skin is very dry and loose. Be strong!

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https://www.pfsfoundation.org/news/peripheral-nervous-system-involved-in-pfs-patients-with-severe-ed/

You too man. It really is so shitty that it’s unimaginable to most people.

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i have my sphincter emg next week. Also waiting for functional mri, I did not ask for it its the neurogsurgeons orders.

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You’re getting a functional MRI?

Damon I read some of your posts and am going through the same thing. I have lost so much penile tissue and am still losing everyday. I cant even use my penis anymore and have no idea what to do. I even had two mris to compare the tissue loss and there is clear evidence of it but the radiologist completly ignored it when writing report to my doctor. The only thing I can do now is to measure the perfusion of the tissue to see if lack of blood and oxygen is causing the penis to atrophy. If I were you I wouldnt do the mri cause its going to be waste of time and money. It will also make you even more stressed when nothing is found alothough something major is happening.

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What did you have take? Finasteride?

it says im getting a rtg of lumbar spine, along with functional imaging.

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when doctors don’t understand something, they tend to either ignore it, or put it off to something else, usually something much more simple and hard to dispute … like depression

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