MNetters with MS - Anyone else out there?

[kagerou]

I was diagnosed just under a year ago with relapsing remitting MS but since I was pregnant at the time and couldn't go onto the treatment plan the Drs wanted I have been pretty much left to myself since then.

I don't know anyone else with MS and especially not anyone else with children too so not really sure what to expect.

So hi, is there anyone else out there? 🤗

Hello! I have RRMS too. Diagnosed about 6 years ago but have had it more like 20. Was picked up on a scan 15 years ago but not communicated to me. It’s not all doom and gloom but do push for medication. I’m on tecfidera.

Thanks for the response @icedancerlenny, can i ask if you had to try a lot of medications before finding the right one?

When it was discussed my Dr basically said they don't know which will work or which will give terrible side effects until after you try them :/

They also couldn't give me anything when i was diagnosed as i was pregnant but baby is now 6 months and no one has been in touch :/

I had rebif first but it was awful so I swapped after about 6 months. I have no problems with tecfidera as long as I eat the right food when I take it.

Sadly you need to be proactive. Have you got a MS nurse? If not, get in touch with your GP and ask to be referred. I had to push to get my medication and my first consultant didn’t prescribe any as he said I was fine. My nurse said I was her only patient not on medication and told me to get a second opinion.

I had hoped chasing down medical professionals would stop once I got a diagnosis but oh well!

I don't have a dedicated nurse yet so i will definitely try to talk to my GP.

Are you on the MS diet? I saw something about it online but wasn't sure if it was just one of those false hope things

Finally got MS nurse coming today ^^