Hi all, i’ve not used this site for a couple of years and it’s now all very different from when i 1st joined 10 years ago ! I just want to give some advice/warning regarding what’s MS and what is something entirely new. I will try and keep things short and not ramble too much, i apologise in advance… I have been ill now for a couple or 3 years with tummy problems and bowel/bladder symptoms which escalated in me being admitted to hospital 18mths ago. After seeing a surgeon on being admitted i was quickly picked up by the neuro rehab ward and transferred there. All along i doubted what i was being told but as they were very forceful and adamant with their diagnosis we had to accept what we were being told. I was told my MS had progressed even further and that my bowels and bladder were now affected and would never recover ! I was put onto a combination of very severe treatments and catheterised, this all eventually lead to all kinds of further problems which culminated in total loss of mobilityand i ended up in hospital for 6 weeks. Despite my protests the staff were very forceful with their treatment and diagnosis and a Psychologist was asked to see me because i was in denial (their interpretation). Eventually after 6 weeks i was allowed home, my consultant reluctantly agreed to remove my permenent catheter and allow me to self catheterise and it was arranged for me to be seen at home by all the various professionals. Only when we got to the point of anal irrigation being suggested did i start to protest again. By this time i had regained mobility and the electric wheelchir could be sent back, i had stopped catheterising, much to the disgust of nursing staff and consultant and felt strong enough to question once again my diagnosis. My GP agreed with me and referred me to another specialist consultant and a year later after a lot of tests i have been diagnosed with a condition completely unrelated to MS !!! Infact i have been told the treatments i went through actually made my condition worse and i am now waiting for surgery to correct things. I have also been told it is a good job i didn’t agree to anal irrigation as this would have been disasterous. I have also had extensive bladder tests and have been given the all clear in that direction too. So, all i would like to say to everyone is, trust your instinct and just because you have MS (i have secondary progressive) it doesn’t mean every problem is the MS. Don’t just accept the first thing you are told, ask for proof of what you are being told. I was slowly being made more disabled by the very people who were meant to be helping. Needless to say i no longer see the same rehab team !!
WOW! Your`s is truly a horror story indeed! it is a good job you did fight back and hold your ground on what the medics were saying.
The fact that you regained your mobility is a huge plus.
I thought you were going to say that you don`t have MS at all.
Have I read that bit right?
I am particularly interested as different neuros are telling me different things and I don`t have a firm dx.
It’s very common and easier for the health professionals to blame MS for everything. Good for you for standing your ground on this one! Congrats on being mobile once again! I get excited and pleased when I hear stories like these its so heartwarming-MS is horrible and I do geniunely feel delighted when even the smallest positive event occurs- thank you for sharing