Diagnostic exams

General Discussion
#1

I am going to a crazy amount of doctors and scheduling an insane amount of doctors appointments. I am trying to get a diagnostic handle on what is wrong with me.

Can anyone let me know if a brain EEG will reveal anything as far as emotional blunting and cognition issues? How about a brain MRI? I have both scheduled.

Does anyone know if a penile/scrotal MRI, Prostate MRI, Pudental Nerve MRI or any other mri can reveal damage to smooth muscle or nerves?

How about penile EMG’s?
Or a penile skin biopsy?

Is there anyway to medically confirm the mechanism of why I can no longer get erections even if there is a naked girl in front of me, or to medically confirm/explain the reason my glans penis has about 5% sensitivity/sensation that it had pre finasteride?
Since most doctors don’t appreciate this disease, I am trying to take the approach of finding anyway to confirm morphological changes. If anyone can shed light on any tests that can diagnose changes I’d be very appreciative.
I have been looking for study after study, and asking doctor after doctor. They all act like this isn’t a real disorder- Dr. Michael Irwig of GW just saw me for 20 minutes and told me to come back in three months without helping me get any real disgnostics. Just asked me a bunch of questions and sent me away. I’ve been to a urologist at johns hopkins, who believed me but couldn’t help with any diagnostics tests but did prescribe me nasal testosterone (which i’ve been hesitant to use until I can confirm I have some sort of deficiency)
How about anyone knowing a specific doctor on the easy coast who can perform any diagnostic test of any sort that can help me prove i’m not crazy. I just got back from a neurologist today who recommended an EMG of my leg… These doctors know nothing. Please if you know what can help prove any changes or damages, please share. I don’t know who else I can ask.

Any doctor recommendations that can perform skin biopsies, cerebrospinal fluid tests, and anything else i mentioned or don’t know about that can confirm changes would be incredibly appreciated. You’ll be at my wedding and funeral.

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#2

Hey man if I were you, I wouldn’t keep chasing doctors. I know that’s not the answer your looking for, but doctors themselves won’t be willing to run next level tests on you such as spinal taps without indication. MRI, sure, but other people have done that here and found nothing.

Save your money, or donate it to the Foundation. It’s better to wait on or fund new research than spending thousands on tests and visits that won’t get you anywhere. If Irwig himself cannot run more tests, I can’t imagine any other doctor providing more care besides TRT. Even the head researcher at Baylor is running hormone panels on @MOONCHILD , which is an extremely basic test.

Save your cash, man. Or spend it on future science by donating. Just my two cents.

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#3

I agree. Thousands have been spent on doctor’s fees and tests which have come back normal or shown nothing that can be successfully acted upon. While we are unable to diagnose the problem properly, we can’t adequately test for it.

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#4

Irwig is a scam if you ask me, he just called it a clinical diagnosis. He simply asked questions and moved on… no treatment.
Ive seen some things showing results, such as androgen receptor frequency in penile skin, or pudental nerve damage. Someone has to have answers.

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#5

Irwig did not help me get any diagnostics at all, and couldn’t even direct me toward anyone who could.

#6

There is no way to diagnose this condition yet, since we don’t know for sure what is wrong yet. The theory currently investigated by scientists suggests that epigenetic changes lead to a change of expression of certain genes. Testing this is part of the Baylor study, but requires comparison with controls, so cannot be done individually.

I have to agree with some of the posters before me that you better save your money for future research opportunities that require funding.

#7

I don’t agree with locking of the Baylor thread…Just my opinion but that’s what the forum is for discussion…He may never publish but a lot of people come and see it closed and it dashes hope…the only thing some have right now…Being able to discuss might save someone’s life…

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#8

There are some changes that arent proven to be associated with pfs that have anecdotally existed. E.g. proving the mechanisms for how erections don’t work, that have anecdotally existed in patients, even if the association with finasteride hasnt yet been proven. Essentially just procing that I do have ed, not that its from pfs. The difficulty i’ve so far encountered with this is that urologists take a look and say i’m fine, even though my glans is very cold and remains rubbery when i give myself an erection, and even though i dont get erections at all spontsneously.

Or there is the neurosteroid differences, if someone knows where or how i can get that done. Ive seen quite a few studies with rats and i believe ive even seen one with humans showing that the Csf has altered neurosteroid levels. If anyone knows where i can get that done id appreciate it.