Inflammatory Neuropathies: make the diagnosis

#21

Hey blase,

this is really interesting stuff and I think you are really onto something. I really think inflammation is a key problem because too much e2 in the body = inflammation. If people don’t think that escalated estrogen in your body doesn’t bring inflammation, then start doing some research. I’m going to talk to my doctor about this next time I see her. Disregard the people that will shut you down because if they can’t look at facts, then thats their loss. i’ll be watching this thread in interest.

just an FYI, pay attention to your diet because your body is creating inflammation for a reason. you can def. cut down the inflammation based on your diet, which is why I know I’ve had success with eating only fish and vegetables for a few days.

#22

Hi guys,

I’ve red here and there on this forum about nerves tests, eg through somesthesic evoked potentials, etc, which in the best (worst) cases just give hints something goes wrong.
Did anyone ever go for a perineal RMI and detected some nerves damages ? There are so many fears around this : if nerves get damaged, I guess one can see it through the proper imaging technique.
So ?

#23

no imaging can reveal a sensory damage

these r useful
Sensory evoked potentials SEP
Somatosensory Evoked Potentials SSEPs

Somatosensory Evoked Potentials pudendal nerve(SEPPNs)
sensory conduction velocity of the dorsal nerve of the penis (SCVDNP)
pudendal nerve terminal motor latencies (PNTMLs)
bulbocavernosus reflex latencies BCRLs

ther’s another one more specific but is performed only in france

#24

viewtopic.php?f=27&t=5661

#25

Hi Prop and Moonman, thanks for the tips and links, but I happen to have gone to those places in France like Blase, whom I know well, did. Though the tests you talk about give some hints, the doctors I have met were just building hypothesis to elaborate their prescriptions.

Hypothesis about inflamations in some specific locations, and no explanations about the origin of these inflamations.

So, even if imaging cannot reveal specifically a sensory damage, maybe a tissue damage that would come with the sensory damage, and that would be consistent with what we already have seen about propecia effects (like for example calcifications) could be seen.

I’m not urging anyone to do this specific research on such a light basis, but if for any reason somebody had performed an RMi on this area, I was interested in reading from him.

Fyi, after I had this electromyogram performed, the doc sent me to the next room to have an echodoppler to try to confirm visually the hint he had through his electric measurements : you can see inflamations, and there is a link, according to what this doctor said to me, with the slowered signal through our nerves.

#26

some infos:
see penis numbness and erectil dysfunction

pudendalhope.com/sites/default/files/NantesDiagnosticCriteria.pdf

another test which is said to be promising:
magnetic resonance neurography (MRN)
see diagnosis part:
pudendal.info/

MR neurography si patented and only performed in the US by this doc.
youtube.com/watch?v=5suF07z42UE

note that he speaks about pain but also numbness.
his technique might be good but is also a very good at commercialising it…, i don’t know if what it is worth.

but a cheaper test is really to see the vascularisation of the nerve: because this often what neuropathy can be: a bad vascularised nerve.
so->doppler echography of this part.

#27

[quote=“fina13”]
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.

That’s exactly the same things I have experienced !!! I mean the whole positions to get a better erection like leaning forward
also while standing and the alcohol theory I also had the sciatica nerve thing we experienced the same things , I think and I would say that it proves also the theory why people had success with GABA and Marijuana

#28

How do you think GABA can help with this?

#29

Because of the muscle relaxation effect in your spinal cord and other muscle areas .

So I’ve heard some people had improvements as they took Xyrem or Xanax . Even when you have chronic neuropathic pain (CNP)
many doctors first prescribe anti-epileptics before they try anti-depressants. But I don’t want to become off-topic. Just my two cents

#30

Offcourse positioning your body different gives you a better potential for erections.
I find this myself too. When i sit its worse, because of too much pressure around prostate etc etc. I get the best of erections when i stand, and longer duration.
From 2005-2007 with a lot of wright lifting and healthy diet, i was almost back to 80% of pre-erection ability standing, whilst sitting it was mid to low.
Then things got worse when i got adrenal issues and by 2010 i couldn’t have any erection at all. Now standing gives me some very good erections, i may lack the feeling some times, but the erection is very good and lasting.

In general after my adrenal crash and for the next three years i lost deep feelings/ and good orgams, i felt depressed for a long time, but today they are back and i can feel them some times very intense but not constantly. It depends.

Positioning and better erection is a clear sign of inflammation down there.

By the way mentioning mary-j i had a try some few days ago and had more than 2 hours of great sex. Everything was extraordinary intense and pleasurable. I felt even better than pre-fin times very very strong erection and enormous orgasm. Also next day i was very relaxed and looked at things very positive. I never knew of its potential but its very hard to find it here, plus the next day effect of immense pleasure frightened me because i had some serious work to do and couldn’t bother

#31

It might also explain why people had success with glucocorisoids. It is used to treat pudenal nerve entrapment. The same class of medications used to treat pudenal nerve entrapment are used to treat autoimmune diseases? :question:

#32

holy shit that is interesting. can you link me to who had success with glucocorisoids?

#33

Cytochrome (slightly suspect)

viewtopic.php?f=30&t=1630&p=17727&hilit=dexamethasone#p17727

Ihatepropecia702 (not full but impressive recovery)

viewtopic.php?f=3&t=3684&p=23349&hilit=dexamethasone#p23349

corrievoip

robbocopp (not a member here)

Mens Rea (made huge improvements but doesn’t attribute it to dexa)

Another member, I think J89 had a two and a half year partial recovery with dexa

#34

You can now add me and JG as positive for pudendal neuropathy diagnosed by the modified EMG/pelvic echo-doppler test blasé has been talking about. So far 6 out of 6 PFSers positive for this test. The doppler shows that the neuropathy stems from what is probably inflammation in the pelvic area on the pudendal nerve trajectory (leading to a form of entrapment syndrome). For some of us its focal (blasé, recently PFS’d) for others more diffuse (me, JG and others, longer standing PFS cases). Worth reminding is that me and JG also have some degree of intra-prostatitic inflammation=prostatitis (diagnosed by the competent ppl at Institut Fournier). But pudendal neuropathy by itself, even in the absence of intra-prostatic inflammation, can lead to very similar pelvic pains (including the testicles and the urethra). Note that none of the doctors we are in contact with (including Dr Virag), unlike mew (hint: NOT a doctor) are excluding the possibility of a fungal overgrowth as the cause (at this point), especially in the face of a few successes with antifungals.
More to come about this in the near future.

Mew, it’s really, REALLY wrong that this thread is in the private (=hidden) theories forum
The OP didnt start this as a theoretical discussion thread but was sharing factual report from a (very) worthwile test and was trying to spread the word about it. Taking this thread to a hidden section is basically the equivalent to muting his voice and destroying his awareness-promoting effort. You have been in effect censoring this way basically every discussion not fitting with the molecular level/epigenetics angle (still at the theory stage although awor’s study gives legitimacy to that angle) for a while now. I hope you will realize in time how wrong this is on every level and change your policy soon enough.

EDIT: actually maybe blasé has himself created this thread directly in the theories forum, I dont know, if such is the case, my apologies to mew for mistakenly accusing him of something he didnt do. But I still question the decision to hide many worthwile discussions from the public eye (=the majority of PFS sufferers). And it still remains that many discussions/posts have been moved to the “theories” forum as soon as they were related to discussion of PFS being anything else that a “molecular level problem”. Plus mew has been clearly actively discouraging discussion of such angles by personal interventions (often posting with an authoritarian tone, or intenting to ridicule/decredibilize the authors) in these discussions and unduly presenting the “molecular level” theory as a fact, over and over again. So my stance is maintained that a change of policy and more unbiased moderation are urgently needed in this forum if it wants to reamin true to its original name (hint : propeciaHELP)

#35

I have to react to second amendment’s post above :
the track record of dexamethasone is far from impressive and you re including ppl that shouldnt even be in this “dexa succes stories” list :
-IHP has only used dexa very briefly with no positive effects loooong (years) before he started the protocol (which he shared here with us) that took him to recovery and lead to almost immediate improvements
-Men Rea doesnt attribute his improvements to dex probably for good reason, maybe same as IHP above
Also
-I have use dexa (attempting to replicate cytochrome’s protocol) with only consequence to make me feel like shit (obvisouly lowered my T levels, which any corticoid is expected to do. Maybe the suppressed immune system is also to blame for the ill effect)
-JG has used dexa after a prolonged full recovery period and it only made him crash a second time, and even harder

But if the inflammatory pudendal neuropathy diagnosis is correct, dexa could/should help people (corticoid with strong antiinflammatory effects, stonger than prednisone) and prednisone is indeed the standard, suggested treatment by the pudendal neuropathy doc.
My thinking is that if dexa does not improve some ppl but instead worsen their case, it can only mean that the inflammation was infection-related, as dexa being a very potent corticoid it also is a very potent immunosuppressant.

Nystatin is probably so far one of the single compounds with the best track record for beneficial effects (barring TRT, maybe antiestrogens and dopaminergic agents such as wellbutrin which will rasie libido in pretty much anybody)

#36

Hey bryce, your estrogen remark is so relevant I have to quote you and write about it again.
Its coherent to say that fin probably raised E2 in everybody, at least temporarily (T reduction to DHT being impaired/suppressed by fin, the only remaining way of the body to downregulate it was by aromatization–>estrogens)
Also like I said me and JG (diagnosed “positive” for pudendal neuropathy by the french EMG doc) have intra-prostatic inflammation also, diagnosed by competent docs at institut fournier.
i dont know about JG’s stamey test cultures results yet, but I have chronic “abacterial” (but still inflammatory = increased presence of leucocytes) prostatitis.
Elevated E2 is responsible for prostatic inflammation / autoimmune, spontaneous prostatitis in a rat model, and drugs (new SERMs and other stuff) with antiestrogenic properties have been tested with antiinflammatory effects on chronic prostatitis in humans.
There are many, many studies on pubmed on the subject, just do a “estrogen prostatitis” “estradiol prostatitis” and “autoimmune prostatitis” search and be overwhelmed by the evidence.
Also estrogens are a factor/signal for candida proliferation and its hyphal (mycelium) morphogenesis, the more virulent form that is able to penetrate deeply into the tissues. Just do an “estrogen candida” “estradiol candida” search on pubmed and be once again overwhelmed by the evidence. Candida has an estrogen binding protein also. Tamoxifen, a SERM associated with some success stories (at least JG temporary recovery among other stories), has strong antifungal properties.

Hypothetising that :

fin–>elevated E2–>inflammation—>pudendal neuropathy (+autoimmune prostatitis in some cases? or flare up of bacterial/fungal prostatitis in others?)

and/or

fin—>elevated E2—>deep pelvic candidiasis—>pelvic inflammation—>pudendal neuropathy
" " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " "—>testicular atrophy? bad sperm quality?
" " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " —>immune system weakening? CFS etc?
" " " " " " " " " " " " " " " " " " " " " " " " " " " " " " " —>HPTA disturbances? (impaired ability to reach homeostasis)

…does not seem unreasonable AT ALL. Only further testing will help us clarify things, but prior theorizing/brainstorming is necessary, although the board admins want to deny us that right since they have decided that their chosen theory (actually Dr Jacob’s early “proposed mechanism” for PFS) was the final word.

#37

I also was just diagnosed with pudendal neuropathy.

#38

Have doctors said what the best way to treat pudendal neuropathy is? Pudendal neuropathy is nerve inflammation correct?

#39

What test did you use to diagnose the pudendal neuropathy?

Pudendal neuropathy is a general diagnosis of nerve disease or damage. I’ve spoken with two neurologists who say there really is no cure and the only treatment is to block pain if it exists. In my case, I mainly have numbness which is supposedly untreatable. The doctor said that there may be hope on the long-term horizon if some drug comes out that is able to regenerate nerves but he didn’t know of anything in the development pipeline.

I’m curious to hear if any other doctors have offered treatments of any kind. I really think this path requires a more significant look as it seems to be in the strongest pattern so far in PFS patients. To my knowledge - 100% of the patients who have been tested for this have received a positive diagnosis though it still remains to be only a handful at this point. Unfortunately, with this diagnosis, the prognosis seems to be pretty grim due to lack of treatments.

#40

Dont have much time right now but have to react to this quickly.
I have papers (from reputed scientific reviews) that say that only in severe or long-standing cases is there axonal degeneration and/or demyelination from nerve compression/entrapment syndrome. Even in these cases once the cause of compression has been removed it takes weeks to start notcingin improvement in conduction as the degenerative process REVERSES, so it is at least partially reversible. In more recent cases there shouldnt be much demyelination/axonal damage, so the improvements should be almsost immediate. This is all from a very serious study cosigned by major specialists in the area btw.
Also, compounds that help speed up nerve regeneration are MANY, some are supplements (the list is huge), some you can get on the balck or gray markets (growth hormone, IGF-1, thymosin beta 4, even melanotan II, etc etc). Nerves DO reghenerate, that s a fact.

PS: I cannot beleive how DOCTORS can so easily allow themselves to mislead people in distress by throwing such baseless or outdated assertions, seems like way too many of them do not want to accept the limit of their knowledge ever, and do not see fit to keep it up to date or expand it as much as possible. A lot of the “veterans” here have been able to see this over and over again. A real, real shame, and one of the main reason this mess has happened to us and is so hard to make progress with. Fucking human ego (and/or greed)

BOTTOM LINE
What I and many others have learned from this mess :
Do not ever put all your hope, your health in a (single) doctor
Always look for a second, even third, heck fourth opinion
Still, educate yourself about your condition and look at the science behind it and the research on the subject, absorb as much as you can. Print some of the relevant stuff to bring to your doc if you have to.
Do not be afraid to challenge your docs with questions, point to them their incoherences, force them to accept in front of you the limit of their competence or knowledge
Even when the science says its impossible, still beleive. Miracles do happen and the body has healing capabilities that always surprise the physiscians.
Do try all the weir natural/alternative shit when its harmless and cheap. I was suprised at how fucking apple cider vinegar is unbelievably effective on my quinolone-aquired “psoriasis”. You wont have any doc tell you this nor will you find it on any research paper.
Science based medicine is great but anecdotal evidence that cannot satisfy to the standards of scientific medicine criteria is still valuable. At least to give you hope. When it cannot hurt, try it.