I m 22years old I was diagnosed on 20th of Oct 2016 and I was in coma from 20th to 24th Oct.den I was shifted to general ward from ICU.after that I tried walking but cudnt walk and I had swelling on my rip hip.on 27th of Oct I was discharged and kept on steriods for a month.i was having body pain even after discharge.unfortunately that swelling didn’t went after eating medicines for 25days and doctor had to operate and found tissues of size 1cm and doctor had told me that bcoz of that lesion ur body might be paining.on 28th Oct operation was done and then for 1 month there was no body pain I used to feel like how I was b4 then from January 1St week of 2017 again body pain started went to many renowned doctors bt there is no diagnosis of anything so the started throwing dart in dark and since January I m eating tablets on depression and nerve pain but no progress.my chief complaint is I have chronic pain in my right leg,abdomen,back ache,cannot sit for long time.the pain is so severe that sometimes I feel like crying and since February 2017 I noticed some designs getting in front of my right and some black small patches.i m saying this bcoz in my reports when I was admitted in Oct it was said that my right eye’s optic nerve had demyelination.is Dat designs and patches due to Dat?if somebody is suffering like me den plz do suggest if ur cured from similar symptoms like me
I’m sorry you’re hurting so much. I’m wondering whether or not you might have 2 different conditions. Have you ever had back issues, like before ADEM? I don’t have the eye issues. I had all the numbness in most of my body and I lost all use of my hands. I had to learn to use them again. Are you aware we all have different symptoms? Did you have MRIs of your spine and/or brain? I know it’s hard, but healing is possible…it will be very slow. Frustration and stress is the worst thing for your healing. Please try and be patient. We’re all here for you. Keep asking questions and feel free to vent if you need. You need to do what you need to take care of yourself. Lynn
No I never had back issues before Adem.yes is had MRI in December 1St week on which doctor said it is clear
The eye problem sounds like NMO. You can find out about it at the Transverse Myelitis Association’s website. The link is below.
As for pain? I have to take Pregabalin (Lyrica) for nerve pain. Also Paracetamol and Codeine.
You can get advice and support also from the Encephalitis Society. Google them and give them a call. They helped me when I first knew I’d suffered from ADEM.
I had pain that nothing cured, but my neurologist recommended acupuncture, and that helped a lot. You would need to find a GOOD acupuncturist (I’ve had a few bad ones - they are worse than worthless), but when you do, that may help.
I’m sorry, but hang in there. It does get better in my opinion.
Do check out the Transverse Myelitis Association’s website to find out about Neuro-Myelitis Optica (NMO); you might have that.