Search found 48 matches

by KJP21
Mon May 09, 2022 8:35 pm
Forum: Speculations and hypotheses
Topic: If you have urinary symptoms...
Replies: 24
Views: 16653

Re: If you have urinary symptoms...

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...
by KJP21
Sun May 08, 2022 3:30 pm
Forum: Speculations and hypotheses
Topic: If you have urinary symptoms...
Replies: 24
Views: 16653

Re: If you have urinary symptoms...

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 tes...
by KJP21
Thu May 05, 2022 6:42 pm
Forum: Speculations and hypotheses
Topic: If you have urinary symptoms...
Replies: 24
Views: 16653

Re: If you have urinary symptoms...

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...
by KJP21
Wed May 04, 2022 10:29 pm
Forum: Speculations and hypotheses
Topic: If you have urinary symptoms...
Replies: 24
Views: 16653

Re: If you have urinary symptoms...

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...
by KJP21
Wed May 04, 2022 10:20 pm
Forum: Speculations and hypotheses
Topic: If you have urinary symptoms...
Replies: 24
Views: 16653

Re: If you have urinary symptoms...

I totally agree with you. It’s no doubt related to neuropathy. I don’t think it’s a classic neuropathy case as not everyone has instances of decreased small fibers. PFS organization did a study in penile skin and found no evidence of decreased nerve density I believe. Not sure how they could do tha...
by KJP21
Wed May 04, 2022 10:02 pm
Forum: Speculations and hypotheses
Topic: If you have urinary symptoms...
Replies: 24
Views: 16653

Re: If you have urinary symptoms...

I would also note for men that if the tone of your penis has changed (hangs looser, longer, but thinner, or shorter and more scrunched up), that too is likely your small fibers having lost their control of your muscles that line your penis. How many more years are we going to debate PSSD and spend m...
by KJP21
Wed May 04, 2022 11:03 am
Forum: Speculations and hypotheses
Topic: If you have urinary symptoms...
Replies: 24
Views: 16653

If you have urinary symptoms...

[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 level...
by KJP21
Fri Apr 29, 2022 1:32 am
Forum: Speculations and hypotheses
Topic: PSSD could be small fiber polyneuropathy
Replies: 193
Views: 48797

Re: PSSD could be small fiber polyneuropathy

Hey all - so I kind of stopped posting here because I don't think the majority of people on this forum want to be productive. They are so fixated on finding a supplement to magically and suddenly reverse their condition, and the PFS lobby is really trying to wrap our condition up with theirs and fo...
by KJP21
Thu Apr 28, 2022 5:45 pm
Forum: Speculations and hypotheses
Topic: PSSD could be small fiber polyneuropathy
Replies: 193
Views: 48797

Re: PSSD could be small fiber polyneuropathy

All I can say is that small fiber neuropathy has been confirmed in my case and those of others who followed my advice. Non-length dependent SFN has no cure, so that's the sad news. It thought that NLD SFN is driven by an autoimmune condition, though there are no known therapies. In some lucky few, ...
by KJP21
Thu Apr 28, 2022 5:42 pm
Forum: Speculations and hypotheses
Topic: PSSD could be small fiber polyneuropathy
Replies: 193
Views: 48797

Re: PSSD could be small fiber polyneuropathy

Hey all - so I kind of stopped posting here because I don't think the majority of people on this forum want to be productive. They are so fixated on finding a supplement to magically and suddenly reverse their condition, and the PFS lobby is really trying to wrap our condition up with theirs and fo...