Forum

Newly Diagnosed

I have recently had my diagnosis of RRMS. I used to be a healthy 28yr old female so this took me a back a bit. I haven’t brought myself to tell any of the authorities I have to. Found it bad enough telling family and my work who are all helpful. I don’t think its sunk in for me yet that I have MS. I have just had a relapse but at the time I wasn’t diagnosed. Think my head is just spinning waiting to find out when I start my treatment plan. Unanswered questions emotional rollercoaster is the only way I can describe how am feeling atm. Thought I’d turn to this. Am dreading returning to work after near 2 months off. Any advice from fellow suffers is appreciated.

Hi

I was diagnosed RRMS nearly 2 months ago, although was expected for 6 months. I had been having tests for 12 months.

although expected it still came as a big shock. I have up days and down days. Started my treatment about 2 weeks ago, I was given two choices Tecfidera(tablets) and Copaxone (injections), I went for the injections as the side effects are potentially not to bad compared to the other choice, and I am still working so don’t want to be off if I can help it. It is hard injecting every day, but the alternative of no treatment is not an option for me. Since starting the injections it has all become a lot more real and so the down days have been more but I pick myself up and try and get in with it. Fortunatley I have not had to have much time off work and I have to say my work colleagues and boss have been fantastic, I work in a primary school so have access to council stuff. My close friends know my situation as do my family but I have come to the conclusion that I don’t really care who knows as long as myself and my kids are ok.

Do you have an MS nurse, a good one is worth their weight in gold. Mine is fab and is always at the end of the phone with any questions I may have. I see my consultant in 12 months unless their are any problems and my nurse regularly.

If you drive have you informed the DVLA? You will have to fill in a form and probably be put on a medical licence.

Its a massive thing that is happening but hopefully with treatment things will settle down. We have it and unfortunatley their is no cure we just have to get on with it and do what the medics tell us.

Returning to work after a long time off is always going to be hard, be open with them if it helps you, I find it a great help that a few of my work colleagues know, they look out for me and if I need a sit down for a few minutes its not because i am being lazy!

Hope the first day goes well and that you soon start treatment, you may feel better once your treatment starts as you are doing something to help yourself.

Mel x

Hi, Thanks for reply. I have a MS nurse who am meeting on Monday for first time. My consultant has recommended I go onto Tecfidera for mine. Am a prison officer and I don’t want everyone knowing so atm it’s just managers and family and close friends. Am in same boat as you have access to councillors at any time I have suspected this for a few years but my dr refused to entertain me as this runs in my family. Want to get on my treatment plan and carry on as normal with the understanding that if I can’t do something cause tired not lazy like yourself. Am signed off until my work Occupational Health come up with a plan on what’s best for me while at work. Hope this does get easier as I have seen what MS can do as my Auntie is paralysed with it from waist down. Ri x