Inflammatory Neuropathies: make the diagnosis

General Discussion
#1

I was diagnosed as Frustrated and 2 other french guys a peripherical neuropathy.

The neuropathy is due to an inflammation: an oedema is blocking the nerve and altering the signal.
This explain the brain/penis disconnection.

They did to me:

  • an electromyogram of the perineum.
    it enabled them to locate approximately the spot where the nerves are affected.
  • a somatosensory evoked potential.

Then they did

  • a doppler of the cavernosal artery, and an ultra sound (attached file to my post)
    it shows that the blood flow is tampered after a precise spot where the ultra sound reveals an oedema pressing the nerve.

I ENCOURAGE TO DO THESE TESTS.
It will be interesting to share the results.
So far i didn’t see many people who took these exams.
Moreover: for those who intent to sue Merck it is a proof of physical damage.

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#2

Did they have any ideas on how to reverse this damage?

#3

they prescribed me 10 days of prednisolone (anti inflammatories) to see how i react.
I doubt it will be enough.
Then they propose corticoids injections close to the inflammed area.

Before undergoing such treatments i want to be sure my body is clear from any infection otherwise it might worsen the problem.
some had big improvements with dexamethasone but some went worse with it: might mean that if there is an underlying infection it is not a good idea to lower your immunity.

#4

This is a relatively important breakthrough, to have found a physical spot where the nerve transmissions are not getting through
 What type of doctor recommended these tests and then who preformed them?

What did they say about the oedema? Do they have any idea what caused it, what you can do about it, what exactly it is (just fluid/swelling?), etc?

#5

I went to see this specialist because frustrated said his test was positive.
You have to see a neuro-urologist or something like that.
If you call a neurologist he must be able to direct you to a team able to do it (if does not do it himself
)

as for what caused it it is still difficult to know.

This two publications suggest that you can induce inflammation in the prostate by elevating oestrogenes (like when we were on finasteride)

ncbi.nlm.nih.gov/pubmed/20626154

To construct a rat model of chronic nonbacterial prostatitis We established a CP rat model by estrogen induction

ncbi.nlm.nih.gov/pubmed/17440979

Chronic nonbacterial prostatitis (CP) associated with voiding dysfunction is a poorly understood clinical phenomenon. The goal of the present study was to induce prostatic inflammation with estrogen and androgen treatment and to record associated urodynamic changes in Noble rats.

Basically it means this results seem to show that ALL the most dependent DHT tissues were all likely to develop inflammation because
of the hormonal change. So the inflammation can affect the prostate AND/OR all the other surrounding tissues.

It basically what solonjk had said in his thread “prostatitis is not the correct word, it is an inflammation of the genial tissues” (which can include the prostate).

In my opinion (well it stays an hypothesis) some must have had risk factors such as bacterias or fungus, or may be only too much sexual activity which wouldn’t have been a problem without this drop of DHT.
On sexual exhaustion forum there are exactly the same cases as me: good hormones but E.D. and shrunk penis which is most likely a nerve affection.

On pubmed a lot of publications explain that the penis lenght is affected by the inflammed nerves after prostatectomy (with preservation of erectil)

ncbi.nlm.nih.gov/pubmed/21114411
ncbi.nlm.nih.gov/pubmed/20540873

All this doesn’t explain all this other symptoms but for “simple case” (E.D. low libido and hormones in range) it might be a good track.
For the other symptoms inflammation in other parts of the body could be considered (if it induces inflammation in the genitals it might induce inflammation in other parts of the body), i think this what the guy on coolinginflammation is explaining.
but well this is just hypothesis no need to say.

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#6

No doctor mentioned inflammation to ‘Frustrated’. I know this because I asked him that exact question. Its in his thread, read what he says. His neuropathy is not something any of the experts had encountered.

Where was this spot???

Thats interesting. Can you provide a link back to when you posted before about this?


also, why have you post this in the theories section? Dont bother with your own ‘theories’ tell us what the guys prescribing you prednisone said!!!

#7

Of course they didn’t say it wasn’t inflammatory

Frustrated did a SSEP but nothing else (if i refer to his post) so the test just reveals the signal doesn’t get through properly.
that’s all.
the inflammation is diagnosed thanks to the doppler and the ultra sound.

shit man this sarcasm is just useless

it is in the same track as prostatitis theory and adding a little something to it: all tissues in the genital area can be potentially be affected by inflammation (including the prostate), and i think it is interesting to be discussed to confirm or not the idea.
si i guessed it could be posted here, so that it is not lost in 80 pages of prostatitis thread.

the man said nothing else (apart from complex anatomical explanation of the nerves location) i went to him because i said: look i think i have neuropathy due to an inflammation they checked and said that was it, then he prescribed me the medication.
neuropathy was expected and inflammation also as it is what Georgiadis and Solonjk say, this diagnosis is just locating the inflammation and suggesting that the inflammation is not necessarily located on the prostate.

as for the exact spot it is “para-rectal” parallel to the upper part of the rectum and not to far from the prostate.

#8

Good stuff blase. Sounds like a lot of crossover to “pelvic myoneuropathy”. Sexual exaustion and hard flaccid reaaly are the same symtptoms at least in the penile and sexual sense.

Check out my thread in the prostate section “are prostate issues really just pelvic floor / perineum issues”.

What is yhe next step in this for you
any type of treatment?

#9

yes i looked at some stuff on pelvic problem.
there might be link between all this.
i am partly thinking that sexual exhaustion could be linked to my case, as i had several relapses when trying to have 2 orgasms in onde day.
but it is difficult to draw conclusion.

currently i am following an anti inflammatory diet (well i try).
i also take - omega 3 supplement
- serrapeptase
- probiotic (i had some symptoms of candida)

i am doing exams to be sure i have not an infection in prostate/bowels

then if in one month my improvements are not good i 'll take prednisolone.

#10

Thats not sarcasm.
If you have a diagnosis its FACT not THEORY. You dont need to post studies to support what you are saying. Its a bit odd to post about your real-life test results/medical treatment in the theories section.

#11

yes it is partly right. i don’t want to bicker.
as for the links
a publication stating that increasing oestrogens triggers inflammation in prostate has to be highlighted.
these publications (with those on nerves/penis shrinkage) are giving more comprehension of the results/symptoms and supporting
inflammation/immune disorder theory which still has to be developed with new findings, thus my posting here.
i think it’s no big deal.

#12

Oscar is correct in saying that no doctor mentioned anything to me regarding inflammation. I do not expect inflammation to be a relative factor in at least my personal case. I did have a doppler ultrasound performed where my penis was injected with a substance that caused an erection and no inflammation was found.

Basically my diagnosis verified that my pudendal nerves are not properly functioning but neuropathy is a very nonspecific diagnosis. In about 50% of the cases the doctors do not find any precise cause and cannot offer treatment.

Blase, have you completed your treatment with prednisolone? Also, were the neurological tests conducted in France or did you do them with Dr. Georgiadis?

#13

I have suspected some type of nerve / prostrate inflamantion as well because of a few things I have discovered that help me achieve an erection, all though it is only about 60 to 70 percent of what an erection was pre-fin. That is if I lie on my side and kinda squezze my but or I guess what you call the area around the prostrate I can kinda get an erection. Also when sitting and leaning a little bit forward or sitting in general kind of helps get an erection. Could it be I am somewhat moving the blocked nerve somehow. And when I lie on my back that is the most difficult to get and or keep an erection. Also this would explain why excessive amounts of walking has helped some on this site. Addtionally, the raw diet some have been trying is really not about hormones but reducing the inflammantion. Lastly, many have reported that when they drink alcohol they feel a bit better in terms of erections, could it be because the alcohol is relaxing the nerves and muscle therefore allowing the muscles to relax around the prostrate and moving the nerve a bit temporarly. I know for a fact when I first start drinking alcohol that is the best when I can pee. Lastly, this would explain why viagra and cialis only help us to get an erection that is about 75 to 80 percent because it is forcing the blood flow. I mean how can we only get an erection of 50 to 80 percent with viagra but not 100 to 125 percent which would probably happen to some one who does not have a blocked nerve. Its because something is blocked. Also sometimes myself and others have reported viagra and cialis don’t work is because the nerve area is just blocked too much sometimes. To move a nerve or reduce pressure we are talking very very small amounts, like hundreths or thousandths of a centimeter. I know this because I have had siatica many years ago and the neurolgist told me this for back problems.

And to explain the brain fog an other issues associated with PFS is that the blockage or infection is not allowing the prostrate to function normally thus not secreate DHT or test which has caused the other non-sexual issues over time.

One more thing I that has always stuck in my mind, two summers ago I had strip throat really bad the doctor put me on predisone for 10 days and during the 9th or 10th night I had the best nocturnal erection I had in a long time. I though it could have been the predisone affecting the hormone but it was probably the predisone temporarily reducing the inflamantion.

#14

The last few days my bum has gone numb. This could very well be a peripheral neuropathy. Hopefully sensation will return but it certainly warrants investigation. I am slightly worried as it came out of the blue.

Any suggestions on what to do?

#15

Hi,

The tests were conducted in France.
Where did they perform your ultra-sound? just on the penis?
for me they followed my cavernosal artery from my groin area, to an area close to the perineum.
they checked the blood flow in various, spot (groin area, butt, etc.)
after on one point the blood is altered, and this spot is trans rectal close to the prostate (always this prostate)
on this spot an oedema can be seen.

if they didn’t find anything it doesn’t mean you don’ t have inflammation issue, i was somehow “lucky” to have something that could be seen. a slight inflammation is enough to alter the signal and cause E.D.

currently i am taking loads of Bromelain which is supposed to help for oedema.
and anti inflammatory life style i try to be more strict as Chi.

i didn’t take prednisolone yet. i am bit fed up with strong meds. as i felt improvements this last 4 days
i want to see how it evolves for the next weeks. but after that i’ll try.

#16

My numbness is a important clinical sign. Seeing neurologist shortly about it.

#17

Have you guys read through this thread on Finasteride and Neurological Damage?

viewtopic.php?p=14034#p14034

Essentially, the author articulately explains the consequences of Allopregnenalone deprivation (which is one of the many things finasteride does): damage to the Central Nervous System (CNS). He likens our sexual side effects to a more localized version of multiple sclerosis. I hate to say it, but the argument and research he provides are very convincing. Especially in the context of two of our most common sexual complaints:

  1. Brain to Penis disconnection
  2. Lack of penile sensitivity

I think as many of us as possible should consider going to neurologists and not only requesting the EMG of the perineum and SSEP and ultrasound that Blase suggested, but also the MRI which Alex Miller suggests.

As I’ve stated before, I don’t think finasteride has done any one singular thing in each one of us
I think it’s destroyed or compromised everything it’s come into contact with: gut/immune system, prostate, penile tissues, brain health, and perhaps the CNS or nerves. And so each subsystem we can treat will help us on our road to recovery


I’m still processing this info, but one of the most baseline things any one of us can do is figure out how to lead an anti-inflammatory lifestyle/diet. I’m a strong proponent of The Primal Blueprint book and the general Paleo/organic/low-carb-high fat-moderate protein/low insulin-raising/low inflammation/diet concept, as well as the Weston Price Foundation’s research on health/nutrition around the world
Google these resources and read up if you’re interested in some simple guides to better nutrition.


and so IF nerve degeneration if truly the cause of our persistent sexual dysfunction, then I don’t know how reversible it would be. But seeing as how many of our theories regarding finasteride damage and general health revolve around reducing inflammation, I think it’s important to ensure that we increase Omega 3 consumption and reduce (inflammatory) Omega 6 consumption. Within the context of the above-referenced diets, here are some ideas for how to achieve this:

Quick primer:
Omega 6 fatty acids (AVOID!) are found in most vegetable oils, which go rancid and oxidize easily; in grain-fed beef and most chicken, and in most processed foods derived from cheap corn and soybean oils.

Omega 3s are found in: fish, grass-fed beef, organic/pastured eggs, (meaning they eat mostly grass)

Many Omega 3 fish oil pills are rancid. I’m also weary of supplementing vitamins instead of getting them directly from quality WHOLE foods.

A cheap way of getting true fish w/o mercury content is eating sardines (packed in spring water or olive oil).

A more traditional supplement to get fish oil (that is still, in essence, a food source with other valuable co-factors) would be cod liver oil. But beware! Most manufacturers kill the natural vitamins and add synthetic forms afterwards. Here is a guide to Cod LIver Oil with recommendations for each continent:

westonaprice.org/cod-liver-oil/cod-liver-oil-basics
westonaprice.org/cod-liver-oil (long list of supporting articles)
http://www.westonaprice.org/cod-liver-oil/cod-liver-oil-basics#brands

Hope this helps. My point is not that suddenly supplementing or over-supplementing with (sometimes questionable) sources of Omega-3 will provide instant remedy. But rather, that as we sort out what can and cannot be done medically, perhaps it’s a good idea, if you haven’t already, to adopt a non-inflammatory diet (cut sugars, processed foods, grains; lower carbohydrate intake, increase omega-3 consumption, eat whole foods/fat and all, etc. And perhaps reconsider supplementation and exogenous vitamins/hormones–like Vitamin D, even? Not a doctor, here, but just consider how the body processes or doesn’t process it w/o the natural co-factors found in whole food). When I think nerve problems and potential reversal, I think in terms of YEARS. So why wait? If you can do ANYTHING, within reason, to educate yourself and change dietary habits, I think it provides a foundation for body repair.

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#18

What are the exact scans that Blase and Alex Miller suggest. If I were to go to my doctor what exactly would I say?

#19

Try to find a solid neurologist that is capable of issuing the following tests (at the very least the first one) BEFORE you visit them and are disappointed:

EMG (electromyogram) of the perineum
SSEP (somatosensory evoked potential)
Ultrasound of the Pudendal Artery & surrounding area

I’m still awaiting my appointment with the neurologist for the EMG. My recent ultrasound from a radiology department technician revealed excellent blood flow (ironic, right?) from ALL arteries
something I keep hearing from all urologists. But the sensitivity issues (lack of penile sensitivity) and brain-penis disconnect scream nerve problems to these doctors. Since Blase and Claro have undergone the above testing and found that they had neuropathy of the pudendal artery (along with 2 other PFS patients), there may be something here. (Both were issued oral prednisolone and then injections at the site of the problem if that proved not to be enough. As of right now, I don’t believe either has tried the HC, because they are still waiting it out, post CP-treatment and mindful of complications and risks that HC brings). I’ll let them elaborate further.

Alex Miller suggests doing an MRI, and that perhaps the problem is more complex than a localized nerve/artery inflammation.

This may be another piece of the puzzle
it may be an adjunct to the prostate/nerve impingement concept, or another Pandora’s box of problems.

#20

I posted about MS treatment maybe of interest

viewtopic.php?f=6&t=5734