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DX in Feb...help needed please!

Hi everyone, this is the first time I’ve posted. I’ll start by explaining how my life has changed lately… I’d been having symptoms of numbness, tingling etc for a long time, but had buried my head in the sand, until last March I started to really struggle. My feet were so numb I became scared to drive, and started to have real balance issues and foot drop on my left side. I’m a teacher, and would bounce like a pinball from one wall to the other when I tried to walk down the corridor, couldn’t stand in the playground, and was really struggling to walk. At the end of May 2013, I admitted to my family I needed help and went to the GP with my fears of MS. He did initial tests, and referred me to a neuro. I very rapidly went downhill, and within 2 weeks needed a frame to walk from room to room at home, and a wheelchair to leave the house. My left foot became completely numb and totally paralysed. I saw the neuro in July, and he immediately said he thought it was MS and sent me for blood tests and a full MRI. He prescribed 5 days of oral methylprednisolone, which have given me movement back in my toes and ankle of my left foot, but I am still heavily disabled, still needing the frame at home and wheelchair when we go out. The MRI confirmed MS, then I had a LP in November which supported this diagnosis. I saw the neuro 10th Feb for the LP results, and he confirmed I definitely have MS, but he wanted me to have another full MRI with contrast ‘to get a better picture of what’s happening’. He also prescribed Amitriptyline for nerve pain and headaches - he started me on 10mg a day, but I’m up to 30mg now, and still regularly have to take paracetamol for headaches. I had the MRI in March, and had an appointment with the neuro which they cancelled at the last minute, and I’m now waiting for the new appointment on 16th June. I’ve got various questions really: Will the next MRI tell him which type of MS I have? Will he offer me DMDs considering my lack of mobility? Are DMDs likely to have any effect on my mobility after all this time? Will he offer me the support of an MS nurse? Thanks so much for reading…although I was expecting the diagnosis, it’s still scary. I have lots of questions about the future, in particular because I have come to the end of my sick pay, and am looking at applying for ill health retirement (I’m only 37), but I don’t want them to refuse me because I haven’t had any DMD treatment yet. I’m also looking at applying for ESA because my sick pay has ended. Thanks again for reading…I’ll be very grateful for any help or advice :slight_smile:

As I understand it, the MRI indicates that a person has MS but which type they have is determined by the neuro based on their history. My neuro asked me which type I thought I had and we agreed that I have PPMS, basically because I have no identifiable relapses in my history but I have lost ground compared to people my age who don’t have MS. My age made PPMS more likely: the older you are at diagnosis, the more likely it is that you will have PPMS.

You will only be offered if you have RRMS and meet any other prescribing criteria. There is currently no medication o slow down PPMS. If you are eligible for DMDs, they won’t repair the damage that has already happened but they should reduce the frequency and severity of future relapses.

You should be referred to a MS nurse.

Hope this helps.

Thank you Mitzi :). I’m 38, the neuro tentatively said it looked like RRMS from looking at my notes, but I guess he might know more when I go back in a couple of weeks for the results of my second MRI, which they did with contrast dye. Thanks for your help x

I think around 40 is the age at which the likelihood if it being starts to increase. I was 40 when my symptoms appeared and they didn’t go away, so from the reading I did, PPMS was always more likely than RRMS in my case. You are right, your neuro should be able to tell you more when you see him again.

Good luck.

Hi Nicki

I really feel for you. I’m 39 and just been diagnosed with rapidly evolving RRMS. My symptoms came on 6 months ago and, scared by the pain, especially in my head, I decided to go and have a private brain MRI rather than wait for the referrals. The pain was too much to bear. Initially diagnosed with a Clinically Isolated Syndrome but then had a relapse 10 days ago of completely new symptoms, namely extreme fatigue and banding in my lower back and tummy. I’ve had an LP which confirm the MS diagnosis and am now on a fast track to another brain MRI ro recount the lesions and hopefully with a recommendation to the new DMT, Ladera (the introvenous one, just approved). Its all terrifying but will defo have access to an MS nurse and they are wonderful. Never be scared to call them, thy’re great.

Best advice, keep a daily symptom diary, its invaluable evidence to help the neuros make a case for you.

Good luck and take care

x