If you have urinary symptoms...

This is for hypothesis and even educated speculation.
6-Eggs!
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Re: If you have urinary symptoms...

Unread post by 6-Eggs! »

KJP21 wrote: Sun May 08, 2022 3:30 pm
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?

Sorry, I thought he said had anyone looked into it or heard about it which I had. But no I didn't try it but looked into it and talked to the main GBS/CIDP support foundation spokes person, she had GBS herself and I learned a lot about it and the treatments and what tests I needed to confirm/rule out autoimmune, which was ruled out for me.
6-Eggs!
Posts: 35
Joined: Sat Mar 12, 2022 6:38 am
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Re: If you have urinary symptoms...

Unread post by 6-Eggs! »

flexstar13 wrote: Sun May 08, 2022 4:21 pm
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?
It just plateaued and then slowly got better in sudden step wise fashion over time. I did reinstate the drug at a micro dose to catch my downward spiraling mental health which it did help just take the edge off but it did not solve or even improve symptoms over what had already improved by itself and in fact many of my symptoms got worse and new ones came about long after reinstating but overall there has been improvement over time, even before I reinstated 90% of my debilitating pain had already gone and I could already walk ok again.

I have dropped dose again about 2.5 weeks ago and still seeing improvement in genital sensation. My glans is about 85-90% most days and even soft glans syndrome is starting to lift in short but many bouts. This is how the numbness started going away too. Short bouts of improvement followed by long periods of numbness and slowly the bouts of good out numbered the bad and zigzagged their way to near total recovery.

My biggest complaint is the bad bouts of buzzing/ringing sensation/sounds in my head and feeling drunk and the funny feeling hands and face, hands are the worst part still. I also have difficulty getting aroused atm and over the last month even if desire is there and orgasm and ejaculation are still completely normal but this is due to the micro dosed drug (exact same delayed onset of loss of arousal the drug gave me in the first place) This should go away once the dose is super low or I stop completely which is what happened last year. My libido and spontaneous arousal went through the roof about 12 weeks after stopping and was constant the whole time until I reinstated where it caused issues again a few months later as expected. The arousal is improving though since I dropped to an even lower micro dose and do wake up most mornings with wood and feeling very aroused and have sexual dreams but it disappears during the day annoyingly.
JP1985
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Re: If you have urinary symptoms...

Unread post by JP1985 »

6-Eggs! wrote: Mon May 09, 2022 10:46 pm
flexstar13 wrote: Sun May 08, 2022 4:21 pm
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?
It just plateaued and then slowly got better in sudden step wise fashion over time. I did reinstate the drug at a micro dose to catch my downward spiraling mental health which it did help just take the edge off but it did not solve or even improve symptoms over what had already improved by itself and in fact many of my symptoms got worse and new ones came about long after reinstating but overall there has been improvement over time, even before I reinstated 90% of my debilitating pain had already gone and I could already walk ok again.

I have dropped dose again about 2.5 weeks ago and still seeing improvement in genital sensation. My glans is about 85-90% most days and even soft glans syndrome is starting to lift in short but many bouts. This is how the numbness started going away too. Short bouts of improvement followed by long periods of numbness and slowly the bouts of good out numbered the bad and zigzagged their way to near total recovery.

My biggest complaint is the bad bouts of buzzing/ringing sensation/sounds in my head and feeling drunk and the funny feeling hands and face, hands are the worst part still. I also have difficulty getting aroused atm and over the last month even if desire is there and orgasm and ejaculation are still completely normal but this is due to the micro dosed drug (exact same delayed onset of loss of arousal the drug gave me in the first place) This should go away once the dose is super low or I stop completely which is what happened last year. My libido and spontaneous arousal went through the roof about 12 weeks after stopping and was constant the whole time until I reinstated where it caused issues again a few months later as expected. The arousal is improving though since I dropped to an even lower micro dose and do wake up most mornings with wood and feeling very aroused and have sexual dreams but it disappears during the day annoyingly.
How long did you have it before your sexual problems started to improve? And how long did it take to get to where you are now?
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)
6-Eggs!
Posts: 35
Joined: Sat Mar 12, 2022 6:38 am
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Re: If you have urinary symptoms...

Unread post by 6-Eggs! »

Sexual problems as in arousal and libido actually got worse and declined over time once I reinstated but has improved again since I did the recent reduction. But sensation and glans erection improved rather erratically since before I reinstated and has continued to improve despite reducing the micro dose further.

My numbness started late November last year and started to improved in small bursts late Dec/Early Jan. Biggest single improvement was a bad crash that lasted about 36 hours about March 25th followed by a huge improvement which coincided with my 0.25mg dose being cut smaller to more like 0.20mg. Went from 50-60% to a 10-20% crash for 36 hours and then 80% and then dropping to 70-80% since and now improved to 80-95% since the latest reduction with dips to 75% occasionally that last few hours to overnight followed by 95% the next morning and settling at 85-90 ever other time.

For me the main symptoms started late Nov after stopping in late Sept and kept getting worse to early Jan where it plateaued and then started seeing bursts of improvements from there which kept getting lower and the and the bad times got shorter. I reinstated mid Jan so I wouldn't loose my mind due to the intense anxiety (had ideas of suicide to a degree, first time in my life).

The sexual problems and numbness is only a small part of the symptoms I had/have. Most of which no one else on here are having.
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