Inflammatory Neuropathies: make the diagnosis


#61

I also think it is a symptom, but I do not believe low testosterone is the cause. I have had my testosterone tested twice now, and I was top 1/3 the first time and over mid range the second. I believe low testosterone is yet another symptom, not the cause. Infact, I believe all hormonal fluctuations (which are all very inconsistent between individuals) are symptoms and not the cause.

To all of those diagnosed with pudendal neuropathy, what are you and your doctors doing to discover the source? How about a small biopsy of the surrounding inflamed area to check for fungal/bacterial infection? Please keep this thread updated; I believe the discovery of consistent inflammation in PFS suffers in a very big deal, and could very well lead us to the root cause of all this suffering!


#62

Hmm…I could see how lack of DHT would inhibit myelin sheath health and thus nerve conduction. So to me, this would be an effect of inhibiting DHT via finasteride and a cause of impotence. Now, what the precise nature of the inflammation is has not been ascertained.

And lowered T could impair immunity—I’m blanking on your history now—did you recently crash into PFS (might you be fighting an infection down there + what exactly is the lip rash – HS-1? Could these be clues of an immune system in flux?) Regardless, as you probably know, although T can give some a temporary boost, balancing hormones is a challenge long-term and also risks suppressing endogenous hormone production. I think imbalanced hormonal expression is overall a symptom of underlying problems, hormones are way downstream…


#63

very good question…
this is on of the first thing i asked the doc.
He said it was not a good idea to make a biopsy in this area. it could cause more damage than good. It is an area very difficult to access.


#64

What is happening here? Has anyone seen an immunologist about determining the source of the inflammation?


#65

well???


#66

This post definitely needs to be bumped! Has anyone got any further with this? I am tempted to be the guinea pig here…if anyone can point me to a good immunologist in London!?


#67

I’d try this if I had the money, definitely. Idk anyone in Finland either but i consider this to be that big of a finding that i’d be ready to fly to France for this.

somebody’s going to joke about Kos but jokes on you, i had pretty massive gains from that trip…


#68

A problem I have been having is getting a harder flaccid penis on standing. This oedema idea is pretty interesting.
The fact that there is inflammation/signs of edema in this diagnosis…

"Peripheral edema

Symptoms of peripheral edema include swelling of the affected area(s), which causes the surrounding skin to “tighten.” The swelling from peripheral edema is gravity-dependent (it will increase or decrease with changes in body position). For example, if a person is lying on their back (supine), the swelling will not appear in the legs, but will appear in the area around the sacrum. The skin over the swollen area appears tight and shiny, and often when pressure is applied to the area with a finger, an indentation appears. This is called pitting edema."

"Causes

Medications: Edema may be caused by a variety of medications, for example, steroids, calcium channel blockers (CCBs), thiazolidinediones, nonsteroidal antiinflammatory drugs (NSAIDs), estrogens, etc.)."


#69

You have this:

forum.hardflaccid.org/discussion/240/epohs-guide-v.3.0


#70

You have this:

[quote]
DISCLAIMER

Thanks for the heads-up.

Do you know what a cure for pudendal nerve compression/irritation is? (the type these guys have got)
Physical Therapy:
* rehabilitation of the pelvic floor, abdominal, gluteal, lumbosacral and hip rotator muscles
* pudendal nerve mobilization, connective tissue mobilization and myofascial trigger point release of the surrounding muscles and tissues.
* range of motion and strengthening of certain muscles to improve core and lower extremity balance and stability

beyondbasicsphysicaltherapy.com/pudendalnerve.shtml

This is almost certainly causing my problems and even other users on here have made improvements with pelvic floor exercises…the only people I have heard curing themselves from this are on the HF site.

I just think this evidence, plus the results, plus the fact people are getting numbness (an obvious sign of nerve problems) is too much to ignore. If anyone lives in the vicinity of New York I would certainly give it a go…if I’m honest I can’t see how eating healthy and exercising are going to achieve this alone. If the nerve is trapped and the original problem is gone I don’t see how it can unblock itself.

my 2 c…I know this has been mentioned before and I’m going to get slated but whatever!! we were all ferried here on the same boat whether we are still in exactly the same one or not :smiley:


#71

There is logic to finasteride having caused this type of injury, but why is E.D. not listed as a primary symptom in the link?


#72

fina13, I am guessing that the Dr. also prescribed amoxicillin or penicillin. I recently had sinus infection and was prescribed amoxicillin. I can truly say it is the first time i felt horny in two years. I felt this way nearly every day. Penis also had more feeling.


#73

As I’ve noted before, there is an amazing amount of overlap here that demands serious investigation. For the time being this is where I’m focusing my efforts towards recovery.


#74

A good primer / discussion on this same issue… viewtopic.php?f=30&t=5341

Apparently the Neurosteroids Levels study has came back with “excellent and significant” results…which to me points that Allopreg. is likely low. Allopreg. being the #1 NS activator of GABA-a. So If the low Allopreg. levels are indeed the case then that in itself could explain the Inflammatory Neuropathies and CPPS imo.

Let’s remember that Fin. decreases Allopreg. levels 8x more than it decreases DHT levels while on Fina.


#75

Can you cite scientific papers that state allopregnanolone plays a role in modulating inflammation and CPPS?


#76

I sometimes get swelling in my penis when I masturbate too often. I’m guessing this is either thrombosis or sclerosing lymphangitis. I’m wondering if perhaps it is the same lack of drainage that is responsible for the inflammation of the pudendal nerves.
In researching this I also found an interesting article: “Severe penile edema: An unusual presentation of metastatic Crohn disease”

onlinelibrary.wiley.com/store/10.1111/j.1442-2042.2006.01259.x/asset/j.1442-2042.2006.01259.x.pdf;jsessionid=6F205B4800677E5E5379C9B40FD2D76E.d02t02?v=1&t=h6a1max9&s=f0209b7e0d23e767de4b8bcb71dffa4d70899300&systemMessage=Wiley+Online+Library+will+be+disrupted+on+25+August+from+13%3A00-15%3A00+BST+%2808%3A00-10%3A00+EDT%29+for+essential+maintenance

I have neuropathy and have read the french doctors have spotted an edema blocking the nerve. I also have problems with digestive track since fin though have not been diagnosed with crohn’s. Just wondering if there could be some connection.


#77

This thread should be a sticky for this section IMO. It is a diagnosed problem and would explain nearly all sexual side effects people are suffering on here.

The simplest answer is usually the correct one…numbness and sexual dysfunction together = nerve problem.


#78

Amen! And this finding does not have to explain any other PFS sides. Although, imagine the possibilities if the source of compression/inflammation is relieved and proper nerve conduction, blood flow, and urogenital organ function return.

Interesting note: One of the PFSers who participated in awor’s study also had diagnosed prostatitis and tested positive with this pudendal neuropathy.


#79

Can you send a link please buddy?

I guess the thing to stay positive about in all this is the fact that there have been forms of recovery on the forum. This is likely not pointing to permanent nerve damage.

If I am prefectly honest I think estrogen is the main culprit in the sexual sides (please don’t rip my head off for saying this!)…maybe JG was really on to something by taking tamoxifen. I looked in to Progesterone cream as something that reverses estrogen caused oedemas but then found conflicting information saying it can actually cause them (plus it being a potent DHT inhibitor scares the shit out of me).

Going to a PT next week and still waiting for a call…wish me luck!


#80

The tests mentioned in this thread - Electromyography (EMG) and Somatosensory evoked potentials (SSEPs) - should be in big flashing letters on the homepage of this website.

“Get an EMG and SSEP to test for Peripheral Neuropathy!!!”

Its that important. These tests provide important objective results. People have spoken of their relief of finally getting a diagnosis.

This neuropathy is the chink in the armour of PFS. It cannot be ignored. And hopefully if enough doctors explore the cause the cause will be found.