Newly Diagnosed

On the 2nd Jan 2016 I was rushed into hospital after losing the feeling in my legs. After 4 hours i had lost all feeling/sensation from my bra line down.i was fitted with an indwelling catheter as I was just wetting myself constantly. I couldn’t move and was scared. I had an mri in the early hours of Monday morning which apparently was fine. I Was then sent for a 2nd mri on the tues but this time of brain and spine with contrast. This showed a lesion at C3 and a lesion at T1. I was also told that there were 3 lesions in my white matter but they were nothing to worry about.i had a lumbar puncture on the 6th early in the morning and then a neurologist came and saw me and I was diagnosed with TM on the 6th Jan. I haven’t really made any progress. We questioned numerous times whether I have got MS as well but consultant said that unless had a relapse it wasn’t worth doing anything else with it. I had a repeat MRI scan in June, which I knew nothing about until 2 days before hand when I got a call from a radiologist offering me a place on the Saturday. I had the results a few weeks later telling me that no new lesions were seen so to carry on as we were. In between my scan and the letter I received a letter from my consultant saying that she had referred me for a scan and as I hadn’t made enough progress she was referring me to an MS specialist. Well yesterday I had my appointment with the MS specialist. He wasn’t impressed with how we’d been fobbed off and said that I very clearly had a very bad relapse in Jan as well as having TM. He said that an episode I had in 2012 was a relapse and gas now officially diagnosed me with Relapse-remitting MS. I’m to attend an information session where I will learn about the main front line drugs and from there I’ll make a decision on which one I’d like to be started on. To say my head is in a muddle is an understatement. I’m glad I have finally gotten answers but I really had hoped it would be something else. Sorry for waffling on

Crikey. Don’t apologise. There was no waffle at all and it sounds like you’ve had a horrendous ordeal. The MS trust decisions tool is a good place to start learning about the disease modifying drugs (DMDs). I’m fairly newly diagnosed myself and opted for Lemtrada as my first line drug. It has punchy side effects but is effective - and I wanted to treat my MS aggressively. If this is an option you are considering I’d be very happy to talk through my choice and experience. Best resources for finding out about Lemtrada are the Lemtrada, Alemtuzumab treatment of MS in the UK facebook group, a blog called David’s Campath Journey ( from a chap who was in the original trial 12 years ago and is doing well - this is what gave me hope when I was first diagnosed) and Tracy’s Lemtrada journey (very detailed blog from a lady who has just finished her second round).

I’m sure others on the board will be happy to share their experiances with other DMDS and their thought processes behind them.

Wishing you the best of luck

xxx

I had a terrible bout of TM in2012 but not enough evidence to diagnose MS I am so sorry this happened to you… it came as a massive shock to me when it happened to me.

I just want to reassure you that with the right neuro rehabilitation you may regain a huge amount of function. It took me a long time and a lot of work bit it did get much better for me.

DMDs will reduce the risk of relapse and allow your body to rest before you commence rehabilitation.

xx