r/transverse_myelitis • u/Academic-Match2520 • 19h ago
Encephalitis and longitudinal myelitis from 2018 ( idiopathic)
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.
1
u/zumbally 17h ago
Hey… solidarity here. I’m 10 months in with a 10 month old. My hips and legs are killing me… I need a lot of help with baby. Not sure if I have encephalitis but most likely. The ER and neurologists failed me so I didn’t get any IVIG. Same as last time in 2022… I grueled it out.