Newly diagnosed after 18 months


I am 31 and live in Greater Manchester, this week was finally given a diagnosis for all the symptoms i have been experiencing over the last 18 months.
After alot or fighting, complaining and being very persistent with tests and results, i have now been given an MS diagnosis.

I knew pretty much from the beginning of my symptoms what the outcome was going to be, however i was told several times off GPs, my first neurologist and other medicsl professionals that i definitely did not have MS, yet here we now are with a confirmed diagnosis of exactly that.

To make all this just that little bit more devasting for me, i currently have a 3 month old little boy.
I got caught pregnant 12 months ago and thoigh all rhe uncertainty was surrounding my health, i could not end the pregnancy, he is my first child and i have always wanted to be a mother so terminating the pregnancy was never an option for me.
Now i have the MS diagnosis though, i am terrifed as to how im going to cope raising him and how much i am going to miss out on with him and not being able to do typical mum stuff.

I am eager to start treatment ASAP to give me aslong as possible to be ā€œnormalā€ with my son, but all ive been told so far is i have relapsing MS and have now been referred elsewhere for further tests and help.
Another waiting game.

I feel extremely let down by the care i have received from the very beginning of my journey to now and just want to seek some form of comfort in people who have some idea what im going through.

Sorry for rambling xx

Congratulations on the birth of your son. I am on a treatment called ocrevus. I was diagnosed only a few years ago with relapsing remitting MS and as my ms was being a bit aggressive I was offered treatment.

Whatever medication you choose all will have some side effects potentially and I really didnā€™t suit the first one that I tried the ocrevus is my second and is working and suits me.

After I had gone through weighing up all the pros and cons in the end my simple choice was down to ā€˜I want to preserve the best that I can be for as long as possibleā€™. If you choose to have more children then this is another factor to consider as that might be something you cannot do if on medicationā€¦.

You are not alone in how long it takes to get a diagnosisā€¦. The unfortunate thing with MS is that there are so many varying symptoms that can happen for which there can be so many other causes that it takes lots added together before they put it all togetherā€¦ I had several before I had optic neuritis and that was the final piece in the puzzleā€¦.



Congratulations on the birth of your little boy!

I am from Greater Manchester too and fortunately I have a good neurologist, the MS nurses team are helpful but often very busy so there can be a wait for them getting back to me since covid which can be very frustrating.

Have you been told anything about what your next steps might be or are you waiting now?

I was really scared at first and then it became the norm. However, it is in my opinion an ā€˜emotional journeyā€™ as now almost 6 years after my diagnosis I am in limbo as my neurologist wants to change my medication which comes with concerns for me.

I donā€™t know if I can help in any way with questions you may have but you are welcome to ask and I will try my best