Quantitative Sensory Testing Results (SSEP)

Symptoms Sexual
#1

Yesterday I was referred to a physiatrist who performs SSEP testing (somatosensory evoked potential). To perform the test, the hook electrodes on your penis and your scalp, evoke a tiny electric shock, and measure the intensity and speed of the signal that is sent to the brain.

To get a baseline test, the doctor sent a shock through my heel to my brain, which was definitely unpleasant. When the equivalent shock was sent through my penis, I literally perceived nothing. Subsequently, she increased the intensity of the signal and I felt slight vibration. These results are sent to my primary urologist and I will see him next month for further interpretation.

Take Aways: I had previously noticed a decreased sensation, but had no idea how diminished it was until I had this comparative test. I finally have tangible proof that this condition is entirely physiological and not psychogenic. I don’t know if this means I have neurological damage or just dysfunction but at least this opens some alleys to pursue. Has anybody else received similar types of testing, and what were the results?

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#2

Don’t know if it is the same test, but it’s definitely similar. The andrologist put an instrument (like a pen) on my penis and told me to tell him when I was starting to feel some sort of vibration. Initially I was feeling nothing but then I started to perceive something, even though I wasn’t shure because it was a slight slight sensation. I told him and it resulted that I was in range. It would be interesting to have similar tests performed on a wider range of people. Let us know what your urologist says! Good luck!

#3

Welld oen for getting that done, it offers concrete proof this has messed with your genitals - which should come in handy in a lawsuit.

#4

Frustrated,
what therapy did the neurologist suggest - if there is any possibility to perform a therapy. I have read somewhere in the forum of somebody having pudendal neuralgy (he also performed a test at a neurologist and he was prescribed gabapentin. However, gabapentin has some side effects - amongst others breast enlargement).

I also did a test at a neurologist, but he said I am in range (even though the test wasn’t very sophisticated)

#5

I will be following up with the urologist soon and will let you know. My guess is I will be shipped off to a neurologist, but I don’t know much about the results other then the fact they were ‘abnormal’ and I subjectively felt almost nothing when they initiated an electrical current. I’m lucky enough not to have pain, for whatever that’s worth.

While you were in range for whatever neurological test you had performed, do you subjectively feel a decreased sensation in your genital area?

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#6

yes, I have complete genital numbness. No fluctuations as some others report. My penis is completely numb (a urologist confirmed that by pinching a needle into my glans - he said that my sensitivity is not normal and that something is not ok - however, he couldn’t do anything / no therapy).

#7

this was exactly a kind of test that i like to perform

in this test is included also Sacral Reflexes, bulbcavernosum Reflexes anal pudend nerve Reflexes ?

#8

The test I had only involved the measurement of the intensity and speed of evoked potentials from the legs and genitals to sensors placed on the head.

I recently saw the original urologist with whom I have consulted and the diagnosis was mild sensorimotor neuropathy of the pudendal nerve. I will have to see another neurologist in the area. Supposedly, the SSEP is not very informative so I will be visiting him to get a host of other tests performed, the extent of which I am not yet fully aware.

I think the SSEP test was not terribly expensive (around 200 dollars) and was covered by my insurance so I would recommend it to those who those who suspect they have have neurological problems.

To Prop -

The SSEP test did not test nerve reflexes, but I am due to get an EMG test which measures the motor response of evoked nerve activity.

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#9

[Size=4]UPDATE[/size]

I visited a neurologist who specializes in peripheral neuropathy to investigate the findings of my SSEP test.

He conducted a large amount of tests to discover the scope of the neuropathy and see if he could detect any causes that were treatable. He tested nerve conduction in my arms and legs and found nothing interesting along with the series of many blood tests that were designed to locate treatable causes of neuropathy. To directly test the pudendal nerve, an extremely invasive test is required and the doctor did not feel it would be helpful.

In sum - the neurologist said he cannot offer me any treatments and that there are no drugs that are currently in later stages of development for nerve re-growth. At this point, I have pretty much exhausted the different types of specialists I would visit and no treatments have been offered (besides TRT which was not effective).

I am pretty much at the end of the line for my medical investigation. My SSEP test shows some kind of ambiguous ‘nerve dysfunction’ and it is unclear whether there is direct damage to the actual nerve. If there is nerve damage, there is really nothing that can be done for me and with modern medical technologies this condition is basically a life sentence.

Truly, my main hope left lies within things like Mew’s research project for which I am greatly appreciative. I also have a small hope for a long-term spontaneous recovery/improvement but obviously I can do to pursue this type of thing except live a healthy lifestyle. I would prefer to not convey this message to the rest of you, but at a certain point I feel it is very important and healthy to accept reality for what it is.

I have family and friends with considerable medical expertise that have all informed me there is nothing I can do recommend I accept this as fact. I don’t regret visiting all of these doctors but in truth it has been very emotionally challenging. For the newly inducted PFS patients who are reading this, I still recommend that you visit all of the relevant specialists (urologists/endocrinologists/neurologists etc) in the case that you find some confounding factor that is causing your problems but be sure to keep expectations realistic as the journey can be quite heartbreaking.

#10

I cannot see a list of your symptoms anywhere, would you mind outlining them please? your focus on ‘nerve damage’ is leading me to assume that erectile dysfunction is your main complaint?

#11

Thanks for the update Frustrated.

  1. Myself and a few others found the sexual symptoms increase with TRT, I wonder what type of ‘nerve dysfunction’ could cause this to occur. For example, I have read that peripheral nerves can become inflammed. Was this mentioned as a possible issue?

  2. Is here a way this ties in with the other symptoms? For example a problem with the CNS? Was this discussed?

  3. If nerve damage is a life sentence I suppose we need to start researching a cure. There are drugs which aid neurogenesis (HGH) and there are theories to a cure on the internet viewtopic.php?f=9&t=5120

#12

  1. Nerve inflammation was not mentioned. He found it very difficult to offer any kind of diagnosis even other than the fact that there was nerve related sensory problems. I may end up trying clomid to endogenously start hormone production again. Some people that don’t have initial success with tweaking hormones sometimes reap benefits after trying it years down the line.

  2. Nothing about the CNS was mentioned. They tested some of the larger motor neurons in my arms and legs and found nothing abnormal. A skin biopsy was taken to test small fiber nerves and he found I was at the low-normal range but I was still within range. I haven’t seen the direct test results yet myself.

  3. It still is not entirely clear if there is nerve ‘damage’ per se. Very few other PFS patients have had this type of testing as well so it is very difficult to say others have diagnosable sensory issues. Personally, I feel searching for a cure for something like erectile nerve damage is on par with curing cancer and out of our capacity since we don’t comprise a huge community.

#13

Clomid alongside thyroid treatment is your best bet, it seems. This is what i am going to try soon.

#14

frustrated this test you did is very interesting indeed.
Yes i feel from my symptoms are from a nerve damage.
I know a french guy who had his pudental nerve completelly damaged by finasteride.
It seems that he first had inflammation and then calcifications “blocked” his nerve.
the intersting fact is that those damages seem to be only located in the parts where DHT was higher in density.
the rest of my body is perfectly ok


#15

just to give some hope:
these nerve “damages” seem to be reversible. I really can testify my up and downs show me that
it is still here.

#16

Ditto. I am 100% sure that if i could fix the underlying cause, there would be no physical issues.

#17

so this was a person off the forum? has he improved whatsoever?

#18

That is exactly why I do not think it is nerve damage
 Because of the brief recovery periods people have.

#19

could be some pressure on nerves 

but caused by what?

#20

Frustrated proved it was part of the problem with this “Quantitative Sensory Testing Results (SSEP)”.
But it is not “damaged” it is more like an oedema.

Inflammation may be the cause of the nerves being affected, because inflammation can flare up or can cool down
which explains the brief recoveries.

Do you remember this coolinginflammation.blogspot.com/
there is a post on finasteride, it is very very interesting.
People may have inflammation in different part of their body (thus the whole range of sides for some), but the main affected parts
are the genitals which are the most DHT dependent parts.
this case is striking:
viewtopic.php?f=3&t=4887&p=39440#p39440
Multiple Sclerosis is involved in his symptoms. he surely had a previous condition but MS is an immune sytem disorder which is basicaly inflammation of the nerves. finasteride seemed to accelerate this MS for him.

it is already known that hormonal disorders can cause inflammation. Pregnant women can have this problem in other tissues.

So may be:
-inflammation and immune disorder is big cause
it can be in different parts of the body depending on which tissues had already previous dispositions for it, and the
most DHT dependent are more affected: that would explain why we ALL have sexual sides, but others have other strange sides.

  • prostate inflammation is one problem for some of us, but it is not, i agree, necesseraly the only one.
  • may be only nerves are inflammed, this guy who had serious damage to his pudental nerve seemed to have inflammation damaging it. he also had prostatitis which went away after a year.
    @golf: yes he is off the forum, no he didn’t improve, his damages were really severe.
  • it is also documented that inflammation/ chronic infection can down regulate the hormonal balance, and that hormone supplementation makes things worse in this case.

well not my ideas here: it is just a summary of different things and theories pointing to inflammation

wanted to write them down to see if someone can point that it is not possible.

I took ibuprofene (anti inflammatory) yesterday and i felt really good, i had good sex drive and erections during one day.
there was an interesting thread about this.
viewtopic.php?f=6&t=1689&hilit=ibuprofene