Hi, I’m new here 
been reading over the last week. I live overseas in the Middle East and I’ve been diagnosed today with transverse myelitis at C2C3 on my spinal column having had arm numbness since Xmas. I had a brain and C-spine MRI. Brain was clear - spine not. My neurologist is sending me to hospital tomorrow for more tests (full spine MRI with contrast, lumbar puncture, bloods and IV steroids) he’s hopefull that it’s a one off attack that the steroids will fix, but autoimmunes run in my family so I expect that I’m at the beginning of a journey. I’m v worried about the lumbar puncture… If anybody has any advice that’d be great! He will give me Valium. Maybe that will be enough? I’ve been so stressed all week and will be glad to have these tests and get my steroids! I’m glad I’ve found this place, you’re all inspiring. Wish me luck
Hi, I have been diagnosed with transverse mylelitis too. I have two areas of inflamation on my spine and am waiting a mri of my brain. Where is your numbness? mine was my feet and legs. They went freezing cold and numb at end of nov. Much better now just have this internal trembling feeling and I think that is slowly fading.
Sorry I have not had a lumber puncture so offer no advice, but know lots of people on here have so hope someone will reassure you soon.
Sounds like your diagnosis is moving quickly, maybe thats because your at the mercy of the UK NHS!!!
Best of luck.
I meant NOT at the mercy of the UK NHS!!!
hi,
i had a lumbar puncture last year. I was terrified but it went really well . take the advice of laying flat afterwards and you should avoid the head ache too. on this site i read someone advising drinking a lot to avoid the headaches .
hope it goes well, good luck
lynn
Hello and welcome
TM is often a precursor to MS, but it can be a standalone diagnosis, so with any luck you won’t have any more attacks.
I’m sure the valium will help. LPs really aren’t that bad any more so I bet it goes absolutely fine! Drink plenty of caffeine-containing drinks and lie down as much as you can afterwards to avoid the headache that a small number of people get.
Good luck
Karen x
Hi Try not to worry about the LP. It probably won’t be anywhere near as bad as you think. I had one last year and it was absolutely fine. It does not hurt and I was lucky not to get a headache afterwards. If you are taking Valium beforehand, it will probably pass in a pleasant haze! Good Luck Teresa xx
Hi Cydonian
By the time you read this, it will all have been over - and you should have found that everyone was right about it being no big deal. Whether it ends up as TIM or it is changed to MS, will probably depend on the LP result. If it is inflammation inside the spine, then the Steroids will almost certainly relieve the symptoms - and maybe for a long time. I went 18 months between the first and second IV steroids.
But, do let us know how it all went.
Geoff
Hey…just wanted to wish you luck for today…it may be a barrage re tests but hope they can give some clear answers for you… x
Hi everybody, thanks for your responses. You are right the actual lumbar puncture wasnt that bad. The valium defo helped! I was in hospital for 3 days for tests and for IV steroids. I wish I’d followed the advice about lying flat after LP as I didnt for as long as I should and the LP affected me badly for a good week! If anybody reads this for future reference LIE DOWN FLAT ON YER BACK FOR AS LONG AS YER CAN AFTER THE LP!
The neurologist has confidently declared that I dont have MS (without having bloods or lumbar puncture results), and says it is Transverse Myleitis which he is confident is a one off event. I go back and see him next week when he will have all the results to back this up, I hope!
Trouble is that I wish I could say that my symptoms have got better since I had the steroids, but they havent really. My main symptom is; right shoulder, arm and hand that is numb / altered sensations to heat and cold, and a numb right thigh. I have seen some improvement since the steroids, but Im experiencing new symptoms; tingling in both feet, itching and more intense tingling in my right arm; tingling in my face. Thigh and shoulder are both much better though. Today I have had a migraine all day 
Since coming home from hospital I’ve experienced the infamous electric-feeling that goes from head to toe when looking downwards, but only when very very tired. Could that have been an effect of the LP?
I’m really hoping these new sensations are just reconnections being made as the nerves repair themselves. That said, I havent had the electric-shooty thing for a few days so maybe I need to lighten up as things are getting better!!? I’m worried by the idea that the steroids havent calmed things down and I’ll need more treatment. The migraine has upset me. Are migraines related to new lesions? I find it all very unsettling and I want my body to stop being weird! I know there are people on here far worse than me, but it’s only 3 weeks since I was told of my C-spine lesion. Prior to this I have been very fit and healthy.
Hi everybody, thanks for your responses. You are right the actual lumbar puncture wasnt that bad. The valium defo helped! I was in hospital for 3 days for tests and for IV steroids. I wish I’d followed the advice about lying flat after LP as I didnt for as long as I should and the LP affected me badly for a good week! If anybody reads this for future reference LIE DOWN FLAT ON YER BACK FOR AS LONG AS YER CAN AFTER THE LP!
The neurologist has confidently declared that I dont have MS (without having bloods or lumbar puncture results), and says it is Transverse Myleitis which he is confident is a one off event. I go back and see him next week when he will have all the results to back this up, I hope!
Trouble is that I wish I could say that my symptoms have got better since I had the steroids, but they havent really. My main symptom is; right shoulder, arm and hand that is numb / altered sensations to heat and cold, and a numb right thigh. I have seen some improvement since the steroids, but Im experiencing new symptoms; tingling in both feet, itching and more intense tingling in my right arm; tingling in my face. Thigh and shoulder are both much better though. Today I have had a migraine all day Since coming home from hospital I’ve experienced the infamous electric-feeling that goes from head to toe when looking downwards, but only when very very tired. Could that have been an effect of the LP?
I’m really hoping these new sensations are just reconnections being made as the nerves repair themselves. That said, I havent had the electric-shooty thing for a few days so maybe I need to lighten up as things are getting better!!? I’m worried by the idea that the steroids havent calmed things down and I’ll need more treatment. The migraine has upset me. Are migraines related to new lesions? I find it all very unsettling and I want my body to stop being weird! I know there are people on here far worse than me, but it’s only 3 weeks since I was told of my C-spine lesion. Prior to this I have been very fit and healthy.
Hi everybody, thanks for your responses. You are right the actual lumbar puncture wasnt that bad. The valium defo helped! I was in hospital for 3 days for tests and for IV steroids. I wish I’d followed the advice about lying flat after LP as I didnt for as long as I should and the LP affected me badly for a good week! If anybody reads this for future reference LIE DOWN FLAT ON YER BACK FOR AS LONG AS YER CAN AFTER THE LP!
The neurologist has confidently declared that I dont have MS (without having bloods or lumbar puncture results), and says it is Transverse Myleitis which he is confident is a one off event. I go back and see him next week when he will have all the results to back this up, I hope!
Trouble is that I wish I could say that my symptoms have got better since I had the steroids, but they havent really. My main symptom is; right shoulder, arm and hand that is numb / altered sensations to heat and cold, and a numb right thigh. I have seen some improvement since the steroids, but Im experiencing new symptoms; tingling in both feet, itching and more intense tingling in my right arm; tingling in my face. Thigh and shoulder are both much better though. Today I have had a migraine all day Since coming home from hospital I’ve experienced the infamous electric-feeling that goes from head to toe when looking downwards, but only when very very tired. Could that have been an effect of the LP?
I’m really hoping these new sensations are just reconnections being made as the nerves repair themselves. That said, I havent had the electric-shooty thing for a few days so maybe I need to lighten up as things are getting better!!? I’m worried by the idea that the steroids havent calmed things down and I’ll need more treatment. The migraine has upset me. Are migraines related to new lesions? I find it all very unsettling and I want my body to stop being weird! I know there are people on here far worse than me, but it’s only 3 weeks since I was told of my C-spine lesion. Prior to this I have been very fit and healthy.
Quick answer (sorry, en route to bed): no.
Again, no. Migraine is a separate condition (although it is more common in MS). Migraine can cause lesions, but lesions do not cause migraine. Migraine can cause neurological symptoms - so your tingling could be because of your migraine.
Sorry for the brevity! I hope you feel better soon!
Karen x
Heya…glad all went well for you…sounds positive so far re your results and lets hope the rest of the results echo the neuros opinion…Sorry I cant really tell you re your current symptoms…but maybe keep a note of them between now and when you see neuro…as he should know about these in any case…
good luck
Thanks for info re migraines Rizzo. That’s v helpful. Scoobie, thanks for advice on noting symptoms for neurologist. I think I’m focusing on every weird feeling I get.