Transverse Myelitis & Rehab: Advice

I  was struck down  v suddenly with TM.  I was v fit and thought I knew my body.  When  I was struck down,  my medics did not  identify my condition till late onset.  I am left thinking that no one cares but u, as it concerns u yourself  and ultimately the know thyself addage is so true.  This illness is very personal.

My advice, get informed, it may be a one time episode or may be a symptom  of worse to come.  You need to get screened for viral/ bacterial causes and autoimmune causes to set your mind to rest.

Steroids estop the infammatory response and stop  any secondary syptoms (symptoms) you are likely to suffer.  Look into the side effects and take advice.  The steroids can assist in recovery and other therapies may be suggested once  the medical screening has taken place.

Symptoms of TM range from complete numbness that increases over body descending like a blanket, no feeling in hands and feet, feeling cold and no heat sensation in extrematies, stiffness, paralysis and loss of function, buzzing, headaches, pain  related to lesion areas in spine.  For me showering triggered chronic buzzing, mal coordination, chronic pain in lesion areas.  Numbness lifted in patches not like blanket as it arrived, stiffness and woodeness replaced this,muscle wastage and loss confidence..

I was told by an alternative health  dr, to also consider what triggered this, what stresses had I put on myself.  Without change in your lifestyle, things could return, a v v terrifying thought. I was told to take vitamins esp B12, gingeng, echinacea and goldenseal to boost immunity.  Please  note that this was under Drs guidance and I want to share my experiences  to assist, but the actions taken by others are under their own discretion.  Medications and alternative treatments should be under your doctors guidance taking into account your state of health and other medications you are on.  PLEASE NOTE THIS!  I did start to pick up, but took v v low doses echinacea and goldenseal fluid as I  was so  ill.

Get neurophysio rehab, get assessed and geta program to assist. Occupational therapy will guide any changes to your home and work.  For me I did not know my rights and was not advised by  my medics  that there is some legal protection  under Disabilities discrimination.  Do ask  your doctors about  what you need to do.  In many ways this is such a life changing condition, touching everything from your personal life to your job and who you thought  you were.

I am still recovering and my view on life has changed, prioriies are  different.  Also  this condition is abit of a grey area in medicine as medics try to understand the genetic and environmenal cues that could be causative.  Know thuself, keep records and get informed!

God bless you and speedy recovery and acceptance of the new you.

All the best,
Tweetygirl6000