New Year, New Diagnosis

Symptoms and treatments
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1

Hello,
So I received my diagnosis for RRMS at the very end of 2022 with what seems to be my first notable relapse being a loss of vision at the start of 2022 so its been a long journey to get to a diagnosis at the beginning of what seems to be a longer journey so certainly seeking advice on certain areas.

Firstly on treatments, I’ve been sent some details and asked to research via MS Society and other sources some of the DMTs. Specifically Kesimpta (Ofatumumab) and Ocrevus (Ocrelizumab). I would really appreciate hearing other people’s experiences with these treatments. I know they mention side effects also so anything would be appreciated.

Secondly is the emotional strain I’ve especially been feeling as I move towards my first appointment with a MS nurse next week. When I originally got diagnosed, I was pretty calm and almost relevaed to find out what was the cause of my symptoms. As well as my first MS Nurse appointment coming up soon, I started a new job after a few months of job hunting and freelancing. I have always had some anxiety but recently I feel my emotions have gotten 10x worse. I felt overwhelmed, just finding myself getting emotional and bursting into tear at random moments and just overall not feeling so good mental health wise. I realise when you get a diagnosis for anything you’ve not faced before, emotions like this can happen but I wonder if anyone has found with good methods of coping or had experience bringing this up with their MS Nurse. I have tried to be referred to mental health services before but the most I got was an awful App which I felt was incredibly ineffective. Further, my new role is quite a hetic and often stressful which I realise is not good if you have MS. I worry I’m going to become a burden. I know this isn’t great to think about but if anyone had any advice of how they have dealt with this or on what I should look to do, it would be helpful.

I feel like thats a lot for my first post but I hope it at least helps me think about this more and get into a better position. Look forward to meeting and speaking with you all soon.

2

Hi there!
No-one wants to hear they have MS…but in my case I was told I
probably had PPMS 25 years ago.

A few years later MS was discounted and HSP was blamed. HSP has 50% chance so being genetic and I felt wretched at the thought of my kids/grandkids getting it.

A genetic test proved that wrong. After 22 years, I finally did get a PPMS label.

After all this i felt desperate and turned to Jesus. He heard my cry and saved me. He can help you too.
Boudsx

3

An MS dx is a big life-changing one and getting one’s head around it is very tough stuff. I think in general you just accept that whatever you’re feeling or however you’re reacting is normal in the circs. It’s unsettling, feeling out of control of one’s emotions, but that’s normal too. It was many months before I could even say the words MS without collapsing into a snotty, teary mess. It’s just all part of each person’s individual way of starting to integrate some very unwelcome news into one’s life.

As for coping mechanisms, I think Dr Time is your friend. A moment may come when you feel you feel reading for some counselling/talking therapy, but only you will know when that time arrives and there’s no rushing it.

As for stress, well, in an ideal world you would reduce it, but there are bills to pay and a career to build and life to live. Again, there are no rights and wrongs here. In time, you may find that you have to adjust some career aspirations to accommodate your health limitations. But no need to rush into that. You may have many healthy and untroubled years ahead, so don’t be in a hurry to cede more territory to MS than you have to, earlier than you have to.