r/MOGAD

I've had my first dose in May, and it's been working for me, have to do it every 6 months. I'm able to walk, urinate properly without catheters. I still get some tingly still in my legs more so my right leg and lower back but overall it's been working. Only issues, I still can't orgams from sex, I can get erections but they don't last long and I have to be comfortable for it to last. I also gey fatigued still if I walk too much esp in the sun but im liking where it's taking me so far, I wonder if anyone else is on it and if so how long and what improvements have you seen from it. #mogad #transverse/myelitis

Hi all, 18(M) and I got MOGAD recently and returned home 3 weeks ago. I had inflammation going all the way up to my brain but suffered no optic issues just lower body. My leg strength is 90% but I still feel dullness in my left knee and foot. My major issues are still bladder having to catheterise many times daily.

They are wanting to put Botox in my bladder to relax the muscles due to having detrusor overactivity. For anyone who has had this after the Botox has gone away has normal urination continued normally or do you still have to get Botox?

Anyone have intense hair loss when starting CellCept? I recently finished a 6 month prednisone taper and have been on CellCept for about 2 months now.

Also read that prednisone can cause your hair to stop shedding during treatment and then massively sheds after.

Good news is no ON relapse so far but losing handfuls of hair everyday is shocking!!

Hello,

I am 20 years old, male. I had MOGAD in 2024 during a very stressful period of my life (I've noticed a pattern here). It started with not being able to pee and eventually, after I got sent home multiple times, because they thought I was faking it, I was taken into the ICU. Things got worse, bcs they didn't know what it was. Long story short I was in a coma for 5 days, had a catheter in for over 1 month and after waking from the coma I was paralyzed. Had a device helping me breathe and a tube feeding me, etc. Total time was 2 months before I got out.

My question is about the bladder and erections specifically, because everything else has recovered (except feeling warmth in my legs).

1ST PROBLEM: It's always either incontinence or retention.

My kegel therapists have all told me to do kegels. Here's the problem, when I do kegels I don't wet the bed anymore, but I can't urinate properly without massaging (something contracts as soon as a bit of urine starts coming out. The sphincter?). When I start practising urinating standing up, I stop the kegels and within a couple of days I'm able to do that again. BUT I start wetting the bed again and I have incontinence again. It's been this cycle for the past 2 years and no one has been able to tell me what to do. They told me it would recover fast, because from their scans, all the nerves had recovered.

2ND PROBLEM: Erection only in butterfly pose.

Now, erections. I am able to get an erection almost ONLY in the butterfly pose, where I lay on my back and my legs are stretching. That's the only time I can feel any pleasure there. I also sometimes get it when laying on my stomach. Actually almost every time. I've read from different subreddits that it could be weak glutes and core, so I've started training them. I've also read that it could be some tight muscles blocking some nerves, that are responsible for erections. The butterfly position is the only position I can ejaculate in.

Now, I lost muscle everywhere (even in my hands, sides of legs, etc.). So it could be that some muscles are super weak and it puts pressure on the pelvic floor.

If anyone has an ideas of what muscles to train, breathing exercises, stretches, etc. Then please let me know!!!

Be as detailed as you want. Google is giving me very vague answers when it comes to MOGAD and I feel like I’m not getting a good idea of what it’s like beyond a generic symptom list. I want to know an actual timeline of symptoms like what age it started and how it started, how it’s going and if anything seems to trigger relapses or make them worse. I keep reading that MOGAD has a very diverse symptom presentation from person to person so I’m genuinely curious. I’m currently in diagnosis limbo and suspect it may be MOGAD. I however really want to read up on what I can before I pay for the blood test out of pocket (no insurance so I’m hesitant to throw money at something so expensive)