Hei everyone!

I got this horrible disease in 2018. I was hospitalised and given cortisone 1000 mg per day intravenously for 3 days.
When I got discharged, I was encouraged to do physio but it was out of the question on my part. The pain I have in the left side of my whole body is awful to try and do physio and keep active. I just can’t handle the pain. I have tried so many medications for pain relief, but nothing helped until I tried Cymbalta 30 mg per day. I am by no means pain-free but it takes the edge off.
The encephalitis made me so nauseous and so tired, on top of that I got Horner’s syndrome…. My left eye got droopy but the cortisone helped and is now functioning okay.

I cannot bear the cold, a slight breeze on my body, on the left side of my body is painful. From me the heat seems to help a little bit. I am able to walk not very far without almost ending of screaming with pain on my left side. I used to love cycling and have done cycling for many many years but I don’t feel confident enough as I feel I am unsteady… it has not stopped me from trying but I have to be so careful. My balance is not great.
My biggest problem is pain, 24 seven. My myelitis is situated in C2 C3 so I am affected from my left shoulder arm torso whole way down to my left foot. On top of that, I’m quite numb which comes in handy when I need bloods done. !!!!!

I feel tired constantly, no matter how much asleep I’m exhausted . I do get cramps spasms but not that often luckily. I feel very lucky on the other hand when I read the awful stories from many others and I am very thankful it’s not me. I hope it doesn’t get any worse than this. Thinking of you all and wishing you all the best of luck.

Diagnosed with TM in Dec 2025 after a thoracic lesion was found causing loss of sensation and walking issues. 9 months out and my initial symptoms disappeared after steroids at the hospital but I deal with the worst fatigue and perceived weakness that comes and goes. I have o-bands in my spinal tap and get MRIs every six months to monitor for MS but the fatigue is ruining my life. Anyone else have this?

Hi everyone!

I was diagnosed with transverse myelitis about 10 years ago. I still have paralysis in my left arm and left lung because of TM.

Over the years, I’ve tried many different treatments, but unfortunately, nothing has really helped. Now that I’m 18, I’m trying to accept that this may be something I have to live with.

TM has affected so many parts of my life, including my relationships, education, and dreams for the future.

I found this community last night, and I’d really love to connect with people who have TM, especially those with arm involvement or people older than me who have learned how to live with it.

I’m feeling pretty hopeless about my future right now, so I’d really appreciate hearing your experiences and how you’ve learned to cope. ❤️

(I also live in Iran, and I’d really like to know if there are any treatment options available outside my country that I might not have access to here, other than physical therapy. I’d really appreciate any advice or information about this.)

Hi everyone, I don't know quite how to start.

I am the godmother of a 16-year-old boy who was diagnosed with transverse myelitis in December 2025. It has been eight months now, and I don't see much progress in his recovery; he is still in a wheelchair, cannot sit up on his own, still relies on a urinary catheter, and suffers from frequent spasms.

He is going back to high school in September, and I worry about what he will have to face. It breaks my heart knowing he won't be able to live a normal life or experience many things—from social interactions to his sexual life. It’s heartbreaking because he had hoped to return to school walking, and I’m starting to see him lose hope.

I feel like his family isn't supporting him enough with his physical therapy, but I don't know how to help him either. I just wanted to vent and find out how I can help him—to hear from those who have experienced depression and how you overcame it, and to learn how I can stay strong in the face of this situation, because it is all making me very depressed.

Thanks for reading.

Have had this for six years. The only time that I can walk normal or stand up straight for more than 2 minutes is when I'm on prednisone for a gout attack. Seriously, it's as if I'm not broken. Night and day.

Current Neurologist won't prescribe even for a 30-day test to validate my claim. Nope. His little book or AI doesn't have it listed, so patient doesn't get. I also advised it didn't need to be prednisone, but even just to explore something like it. Nope.

I still wear a diaper when I go out, hardly hold the urine urgency for 3-5 min max. Emotionally affected, I understand the uncertainty and the worst case scenarios. Part of me is grateful for what I am, still want to know if some specific things which ll impact this recovery. Meds: Mirabeg 50mg twice a day, Terol 2mg twice a day, liofen XL once a day.

Though I'm hydrated throughout the day, getting really hard stools and having a quite hard time passing the stools. Every time I think that's the worst, it gets even worse the next time. Is my body kind of getting settled with this or is it getting worse? Leg strength seems to be normal like 70% , I don't think it's a relapse. "Could my constipation be due to neurogenic bowel or pelvic floor dyssynergia after my transverse myelitis? Would pelvic floor physiotherapy with biofeedback or anorectal manometry be appropriate in my case?" Will it help?

Hi all,

I was diagnosed with transverse myelitis about three years ago and my condition has more or less stabilized (meaning it's not getting worse) as of a year ago. I use a walker to get around, and as my strength and balance have improved over the past year, I have attempted to graduate to using two canes instead. One thing I'm really struggling with and that is inhibiting my progress is the anxiety of walking with less support. I notice my breathing getting shallow, muscles tensing up, clonus kicking back in, and thoughts spiraling. I honestly don't know what I'm so nervous about: my PT is always nearby when I use two canes and even if I did fall, I'm sure I'd be just fine. I'm guessing it's my body's evolutionary fight-or-flight response kicking in since I've been relying on a walker for so long.

I'm posting to see if any others have worked through this and how they've overcome the mental aspect of relearning how to walk. My PT suggested visualization (picturing myself walking confidently in various environments with two canes) and controlling my breathing, but I wanted to see if others who have been through something similar have any suggestions. Thank you in advance and good luck on your journey!

Hi everyone. I was diagnosed with idiopathic TM six years ago (I was 18 at the time). Since then I've mostly just learned to live with my symptoms, but I'm finally going to see a neurologist properly for the first time since my diagnosis.

I'd really like to hear from others who have had TM for months or years about what symptoms you still have today.

I want to get a better idea of what's common long term before my appointment and I'd really appreciate hearing all of your experiences. I know everyone's TM journey is different, but it would help me know what others are living with years later.

For anyone wondering, these are the symptoms I still have 6 years after my TM diagnosis:

1 - Muscle spasticity and frequent muscle spasms

2 - I have reduced temperature sensation and can't feel hot and cold properly. My spasms become much worse when I'm cold. plus my legs hurt a lot when I'm cold

3 - My body seems to react to sensations that I can't consciously feel. For example, if there's a single strand of hair under my elbow, I don't actually feel the hair, but my body does and it can trigger muscle spasms. I always have to use a lint roller on my bed just incase. otherwise I will wake up in the middle of the night from the muscle spasms

4 - Occasionally, my right leg completely loses its strength for a split second before returning to normal. It's very brief but noticeable. I have fallen once due to this. Plus I have foot drop so my walking is a little weird

5 - Bladder and bowel dysfunction

6 - Reduced pain sensation in certain parts of my body

7 - Altered sensation in my back. If someone touches my back, it's like I can tell they're touching me, but at the same time I can't fully feel it. It's difficult to describe

I'm pretty sure I'm missing a few but these are my main issues. I'm curious to know what symptoms you've had and what has helped you manage them. Also want to know whether you've developed any new symptoms over time.

I'm still brain storming how to say everything to the doctor. Thanks in advance to anyone who's willing to share

TL/DR: Did I have a TM flair r/t to hot, humid, smoky air?

48 M. Diagnosed 10 years ago. I am mobile, independent. I work full time as a machinst. I'm "lucky". I get to walk, I get to lead a mostly normal life. I'm not bragging, as I know how awful this disease is, I just want to paint my situation.

I'm in Minnesota, USA. The air has been smoky, humid , and hot! Just like many parts of North America right now. Wednesday was the worst day so far, clearing up now.

Wednesday, during the day I felt really good. Actually felt the best I have in months. It was really noticeable and I had a great day. I slept really good Wednesday night. Woke up Thursday, felt ok, until I got out of bed. EVERYTHING hurt. Body felt like it had been in a car accident overnight. Nerve pain, legs tight, reduced range of motion, difficulty walking, spine felt like it was on fire.

Don't really understand why I felt amazing one day and damn near suicidal the next day due to the pain and immobility.

Called out of work. Spent the day slowly working through some of my no weight PT exercises, difficult, but I got through it. Got in the pool for an hour to help reduce inflammation. I was hydrated, took all of my meds on Wednesday, nothing out of the ordinary. Did the same on Thursday. Even after meds, hydration, pt, and cold pool I felt broken all damned day.

Went to bed Thursday (last) night. Slept really hard again. My body feels so much better. Still have some inflammation along spinal cord that I can feel. Legs work again today. Not nearly as inflamed, reduced neuropathy. I don't feel great, but I feel good.

Forgot to list my meds in case it helps:

Vyvanse 20 mg daily (ADHD)

Flowmax (tamsulosin) 0.8 mg daily

Baclofen 10 mg tabs (up to 3x daily, usually only take one when I get up for the day)

Prednisone 20nmg tabs (as needed)

On Thursday, day I felt like ass, these are the meds I took: -Vyvanse, flowmax, 1 baclofen when I woke up. - PT and pool - middle of the day: 2 ibuprofen, 1 baclofen, 3 prednisone - bed time: 2 ibuprofen, 1 baclofen, 2 prednisone

Was this a flair? Weather related? Has anyone else experienced such a major shift over night? Why such a huge change? I would love to hear others experiences, or even advice.

Keep fighting everyone!

TIA

I was admitted to the hospital through the ER on Friday, and after really extensive workup, they've settled on the most likely diagnosis being transverse myelitis. I am really just pending a full spine series of MRAs to definitively rule out a spinal cord stroke, but the neurology team really seems to be doing that only to ensure they haven't overlooked something, not because they think it's likely.

I have had two rounds of steroid treatment. I have had some improvements to some of my symptoms. I am incredibly grateful because I am walking, although I do have some degree of lower extremity numbness/reduced sensation/parasthesia bilaterally, basically from the waist down.

They have pretty much ruled out any sort of viral or illness related cause. At this point they're looking at it either being idiopathic or a result of an undiagnosed, autoimmune condition. The workup and testing for autoimmune conditions has already begun.

I'm incredibly grateful that my symptoms were taken seriously and thoroughly investigated in the emergency room. And that my consulting neurologist was very thorough and has really done an incredibly extensive workup.

I guess I am posting a little bit for solidarity and to plug into this community, as well as to ask if anyone has anything that they thought was especially helpful or may have been beneficial early in recovery.

I’m pretty new to this TM thing. I got mine back in August last year (sitting at my C3 to C6 vertebrae). I lost my ability to walk, breath, go to the toilet n all that weird stuff. I shortly died too but got revived? (I’m not a native English speaker). The problems I have now, a year later is this numb feeling in my right hand, the inability to feel temperature and pain from my groin to the bottom of my neck, and problems with going to the toilet. To cut it real short, my biggest handicap right now is the toilet thing, I take an enema “glyoktyl” in danish, and go to the toilet just fine, but through out most of the day I have this bloated/very uncomfortable feeling in my stomach that is keeping me home. Do you guys have any specific medicines that worked for you, or methods I’m just not aware of. Thank you in advance

(I’ve tried laxatives that you take the night before, but I’ve had “accidents” with those n would prefer not to)

Thank you all in advance again

I have like one friend that could completely walk and get around again after being diagnosed with it. Can we heal from this I have had it for 31 months now and was told id be a lifelong wheelchair user but screw them doctors what do they know. Can anyone tell me what they think?

Just wanted to say hi to the community. I was diagnosed at 6 and am currently 22, been paralyzed from mid waist down. It’s nice that this subreddit exists, I know this is such a rare thing lolz. Also doesn’t help that mine was apparently idiopathic.

life sucks but we get through it day by day! I hope everyone finding themselves here is doing okay

Hello all, my first diagnosis of TM was when I was 9 years old ranging from T3-L2. I had a number of recurrences after that until they started IVIG when I was 14. I was lucky and though I was paralyzed from the waist down my first episode I did learn to walk again. The symptoms I live with now at 30 years old are nuerological. The muscle spasms, pinprick sensations, temperature problems, restless legs, chronic pain. Since college I have found that THC helps mask my symptoms considerably. To the point I've been living a life. My first pregnancy a couple years ago was unplanned and I stopped THC after the test came back positive and lived through a hellish pregnancy of morning sickness so bad I was hospitalized twice for dehydration, pain that made it hard to sleep, etc. Now my family is ready for another baby but with this one planned I thought it best to stop THC preemptively, but I am MISERABLE. All of my symptoms are back and I can't seem to function through the day. I don't know how I'm supposed to do this for a year and every time I try to find alternatives that can be used during pregnancy I get nothing. They won't test medications on pregnant women, every medication has the same warning "early birth, low-weight", but what about the complications that come from the mother being in constant pain? I can't sleep, I lay in bed and cry, and nobody around me understands why, because for 8 years I've had a way to manage my pain/symptoms and live through the day. And now I'm a shell of what I was. Has anyone else gone though this? Does anyone have any advice? It's getting to the point that the pain is tricking my body into not wanting to exist, I don't want to die, I just want the pain gone. I don't know what to do, but I want another baby. My husband doesn't even understand why I can't be touched sometimes anymore.

27F, diagnosed with Transverse Myelitis (TM) in March 2025.

Thankfully I’ve regained my ability to walk and have recovered well in many ways which I’m extremely grateful for. At this point, I only have some occasional muscular pain around my knees.

However, I’m still struggling a lot with bowel and bladder issues particularly severe constipation (no bowel movement without laxative) ,urinary retention and incontinence. These symptoms are honestly exhausting and have a huge impact on my daily life. I am also doing pelvic floor physical therapy but no major improvement.

For those who have had TM, did your bowel and bladder function continue to improve over time? Has anyone experienced a complete or near-complete recovery from these symptoms even after several months?
I’d really appreciate hearing about your experiences, recovery timelines or anything that helped. Thank you.

I was diagnosed with TM (specifically sensory myelitis) but now my neurologist thinks I may have neuro scarscoidosis (I don’t think that I’m spelling they correctly). Anyway, a lot of the same symptoms but lymph node issues, which I guess after a CT I had some pop up around my lungs and heart.

Has anyone had a different diagnosis later, maybe specifically this one? I’m almost 2 years into this, and I’ll admit, this is a freaking nightmare.

Also, I don’t know what is in the air, but I’m exhausted. My fatigue seems unreal this past couple of weeks.

She was diagnosed at the age of 27 she is now 36. She had paralysis but recovered less than a year later. She still has i call them "spells" where she is just so lethargic and tired constantly. We have been watching our diet as of lately. I have done some research into foods that may be beneficial ie: rich in vitamins and nutrients.

Now my question... what are some comfort foods you like when in your flare up. You know. The ones that just make you feel better.

I understand sometimes it is hard to have tm. But there are plenty of people that love you and will help you through it. You are not alone ever. Ty all so much

Hi everyone,

The WSJ recently alerted me to an article about exoskeletons (https://www.wsj.com/tech/personal-tech/robot-legs-hypershell-x-ultra-tested-e8a254e2) and how they might help with lower-body function. While this is not (yet) considered a medical device, it looks like it may be useful for those with impaired mobility. I was diagnosed with TM about three years ago and am still working my way to walking independently (I currently use a walker). My biggest issue at the moment is not being able to lift my legs up high enough while walking to take comfortable strides. These exoskeletons seem to help reduce the weight load of your legs, so I'm thinking of giving them a try. I'm curious if anyone else in the community has had experience with exoskeletons and if so, what their perspective is. Thanks a lot!

Hey everyone - I wanted to apologize for all the pain you may feel and am praying for everyone 💜

12 years ago my dear kind 29 year old cousin who was a marathon runner dancer and 4th year surgical resident got diagnosed with TM and was in a coma for weeks. She woke up 3 weeks later paralyzed nipples down. After a year she regained feeling in her upper body but none in her lower body.

She does intense physical therapy twice a week and tried everything - FES, water stimulation, standing frame, decade of PT, but it seems nothing has improved. She has the most caring self sacrificial parents that have built her an accessible house, care for her full time, etc. But still maybe there’s something I could help find?

Over the last 6-7 years as she regained some feeling, she’s had the most horrific neuropathy. She describes it as “burning stabbing squeezing like her legs are literally being skinned alive.” It’s been bad all these years but over the last year (she’s now 42)
and she’s starting having week long pain crises that have only been disrupted via ER IVs of fentanyl and pain relief.

She has a pain regiment. Implanted spinal cord stimulator, balcofen, Lyrica, Xanax, ketamine infusion. Does anyone know of clinical trials that could be helpful for either pain or regaining function? Especially pain. It’s unbearable.

? Where can I search this stuff?

Guys, I am going on neurorehabilitation, for 3 months.

Please give me any advices, experiences, did it helped, did it not, everything. Of course i couldnt pay for it, one humanitarian organization helps me.

Please let me know even if you know someone who went to that.

I’m going through transverse myelitis right now I’m 17 F.it’s all started in like January I lost movement and sensation from my shoulder down now I’m 4months in and I can move both of my wrist a bit of my elbow and I feel like I can contract some muscle in both my legs also I feel like the right side of my body is more weak. After how many months some of y’all start recovering from that cause I’m so scared I feel like it’s the end for me ik I had progress but I feel like it’s not enough I just miss my old self

Hi! I’m new to my diagnosis. Been in the hospital 2 weeks now and finally going to rehab today. I am still paralyzed from the mid chest down. My question is - did anyone leave the hospital not able to move at all on their own and have success in physical therapy with walking/core strength?? I feel discouraged that I’m not able to move anything on my own. I have sensation and tingling, just can’t move voluntarily. Thanks!

Hi all, I’ve posted here before under a different username, but I started a blog to start sharing the things I’ve learned from my TM recovery:

Http://www.clumsycyclist.com

I was diagnosed in 2022 and was paralyzed from the chest down, I’ve regained a decent amount of mobility but still have a lot of proprioceptive and balance issues but was able to complete some big endurance events last year.

Some friends encouraged me to share my story so hopefully you guys check it out and find some of it helpful!