If you have urinary symptoms...

This is for hypothesis and even educated speculation.
Integra
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Re: If you have urinary symptoms...

Unread post by Integra »

Calm down men, it's not sfn. Don't talk about these things without any knowing.
flexstar13
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Re: If you have urinary symptoms...

Unread post by flexstar13 »

What about this prednisone regime! First time hearing about it. Did anybody try it?
KJP21
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Re: If you have urinary symptoms...

Unread post by KJP21 »

you take high dose of prednisone for 5 days and taper off of it for 5 days. if this makes you start to feel better (won't be immediate as nerves don't regrow overnight), you know that your problem is an autoimmune reaction attacking your nervous system. unfortunately, prednisone isn't a cure in most cases. you'd have to be on it all the time to keep your immune system suppressed and inflammation suppressed. but you can use this method as an easy way to prove whether the root problem is immunity/inflammation
flexstar13
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Re: If you have urinary symptoms...

Unread post by flexstar13 »

KJP21 wrote: Thu May 05, 2022 6:42 pm you'd have to be on it all the time to keep your immune system suppressed and inflammation suppressed. but you can use this method as an easy way to prove whether the root problem is immunity/inflammation
Have you tried it?
6-Eggs!
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Re: If you have urinary symptoms...

Unread post by 6-Eggs! »

KJP21 wrote: Wed May 04, 2022 10:29 pm I’d also note that the PFS penile small fiber study was flawed because it used foreskin samples. I’d venture to say that almost everyone complaining of numbness is complaining about glans/head numbness, because that’s where the nerve endings are.

Take a piece of cold metal. Touch your foreskin, then touch your glans/head. I’m willing to bet it feels normal on the foreskin and noticeably diminished at the glans/head. Tell me if I’m wrong.

This insanity has to stop… We are losing people to suicide who could potentially be saved by a prednisone regime.

The “epigenetic change” talk is killing people!

Well that's becasue the foreskin is significantly more sensitive than the glans with temperature and tactile. The glans is actually not that sensitive in an objective way other than pain and sexual sensation.

I think the numbness is much more easily noticed on the glans as it already has a high threshold compared to many other parts of the body. The foreskin is actually a good area to test as it's highly packed with nerve endings and is often effected in PSSD. It certainly was for me and still subtly is but most of my penis sensation has recovered. It's my hands that have persisted the longest but penis was by far the worst numbness. Couldn't feel it at all 3 months ago, felt like I had a foreign object there all the time.

Here is some info about the glans/foreskin misconceptions commonly reported.

https://blogs.bmj.com/medical-ethics/20 ... s-parents/
6-Eggs!
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Re: If you have urinary symptoms...

Unread post by 6-Eggs! »

flexstar13 wrote: Thu May 05, 2022 6:40 am What about this prednisone regime! First time hearing about it. Did anybody try it?
I did and IVIG as there was speculation of GBS/CIDP or MS initially but the battery of tests, hospitals and neurologists ruled out any nephropathy or structural CNS issues, although I will ask for the same blood tests you had to be sure and maybe a biopsy as I also had bad numbness in my legs and still feel funny and burning like sensations around the ankles on and off over very short periods of time.

The aforementioned treatments are quite nasty for some people, I think some of the MS daily medication might be better? For your form of SFN they mention IVIG as the go to treatment but is in trial stages only atm.
KJP21
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Re: If you have urinary symptoms...

Unread post by KJP21 »

6-Eggs! wrote: Sun May 08, 2022 4:13 am
flexstar13 wrote: Thu May 05, 2022 6:40 am What about this prednisone regime! First time hearing about it. Did anybody try it?
I did and IVIG as there was speculation of GBS/CIDP or MS initially but the battery of tests, hospitals and neurologists ruled out any nephropathy or structural CNS issues, although I will ask for the same blood tests you had to be sure and maybe a biopsy as I also had bad numbness in my legs and still feel funny and burning like sensations around the ankles on and off over very short periods of time.

The aforementioned treatments are quite nasty for some people, I think some of the MS daily medication might be better? For your form of SFN they mention IVIG as the go to treatment but is in trial stages only atm.
Wait, how did you get IVIG? On what grounds did they approve that for you without a confirming skin biopsy? Did it help your symptoms and allow for regeneration?
flexstar13
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Re: If you have urinary symptoms...

Unread post by flexstar13 »

6-Eggs! wrote: Sun May 08, 2022 4:04 am It certainly was for me and still subtly is but most of my penis sensation has recovered. It's my hands that have persisted the longest but penis was by far the worst numbness. Couldn't feel it at all 3 months ago, felt like I had a foreign object there all the time.

Here is some info about the glans/foreskin misconceptions commonly reported.

https://blogs.bmj.com/medical-ethics/20 ... s-parents/
How did you recover from numbness?
JP1985
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Re: If you have urinary symptoms...

Unread post by JP1985 »

KJP21 wrote: Wed May 04, 2022 11:03 am [changes to stream strength, changes to urgency (going more frequently in smaller amounts more likely than going less but in larger amounts, though both are possible), significantly more leftover urine in the urethra after finishing, etc etc....]

... please stop wasting your time with dopamine levels, AR receptors, etc etc. Your health is likely being hijacked by bro science supplementation nonsense and PFS people's obsession with AR changes and epigenetic changes.

You have neuropathy. Maybe from toxicity, maybe from an autoimmune condition.

Please please please, for your own sanity, think about this logically.
Yea I have these symptoms along with diminished sensation and weakened orgasm. Do you know the way to go to fix this problem?
Last pill March 2019 - Citalopram for 7 years
Numbed penis and weak orgasm
Fatigue
Slightly blunted
Dizziness (this has improved a lot in the last 6 months)
KJP21
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Re: If you have urinary symptoms...

Unread post by KJP21 »

I am getting many private messages about people having these symptoms and asking how to "fix" it. There is no magic fix unfortunately. Nerve regeneration is hit or miss. If you have had no other symptoms develop over the years, consider yourself lucky and focus on exercise (blood flow) and healthy eating/lifestyle. Maybe one day there will be new treatments that promote nerve regeneration. Your body should theoretically make significant progress on its own if the offending issue (toxicity or autoimmune response) has stopped.
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