Struggling with MS diagnosis

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I have recently been diagnosed with MS and I am really struggling. I have recently lost 5 stone and was feeling the best I had done in a long time then bam woke up one day with symptoms and after a hospital admission and further tests have been diagnosed

Neurologist thinks I am in a relapse which is causing the symptoms effecting my legs and balance but I am terrified this is how my life will be now going forwards. I can’t get my head around the fact I have this illness. I’m looking at getting started on DMT Kesimpta which the have said will take around a month to get up and running. The fatigue is killing me. I’m just crying all the time that this is now my life. I’m off work. I’ve had to defer uni I can’t drive as I’m so dizzy. Not really a question sorry more of a rant as I’m just feeling so awful. Any advice or tips would be gratefully appreciated xxx

Relapses can be absolutely awful but the other side of the coin is remission, when you have relapse/ remit MS. I’ll share my experience with you so you can hear a long story and see the positives.

I’ve had relapse remit MS for 20 years. In that time medicine has moved on so much. I’m now on 2 tablets a day that have stopped my relapses and on my latest MRI my MS has retreated and the lesions are smaller or gone! In 20 years of having MS I have:
Travelled the world and lived abroad
Trained and succeeded in a difficult profession
Had healthy children
Got married
Run, walked and done as much yoga as I like
Lived a totally full life.

You are getting great care, straight onto DMT (I waited 5 years to start the medication for mine) which are very effective these days with lots of options. You are in a good position.

The shock of diagnosis and the horrible horrible relapse will be awful and you have my big sympathy with that. Things WILL be brighter though I am
sure.

… this is a very quiet topic OP you might get more people noticing your post if you put it in Chat.
I hope you are ok.

I want to give you the biggest hug because it is absolutely shit. I wish I had some easy fixes for you but the best I can do is the following:

The weather here is really hot and you may find your MS is temperature sensitive, so try to keep cool and well hydrated.
I hope you've been allocated a specialist nurse - get in to see them as soon as possible.

Ask about counselling and physiotherapy. The counselling was of some help, the physio keeps me as mobile as I can be for the moment until drugs are sorted.
Other things like acupuncture help some people, so don't dismiss anything.

Hi 👋

I also have MS and was diagnosed in 2022.

My top advice would be: please be kind to yourself, you are still processing some seismic news and it sounds like you are in the middle of a relapse which will make everything seem much worse/more scary. It will take time to make sense of/process the diagnosis, and for this relapse to ease, so just take things one day at a time. It’s not fair, and it’s ok to feel sad/angry, and to cry if you want to - but I promise it won’t always feel this overwhelming and bleak.

I have been on Kesimpta for 18 months now, it’s been great for me - I’ve had no new lesions and other than the first month (when I had a flu-like reaction to the loading doses) no side effects. Hopefully you’ll have a similarly positive experience, therapies really have come on a long way in recent years.

Like others with MS, I still work full time, still drive, and lead a fulfilling life with my young family. It’s taken some time to forgive my body for some of the things I can no longer do as well as I used to - but hey, I can still do lots of things, and for that I am grateful. There are also good support networks locally - where abouts roughly are you based? Some MS teams support newly diagnosed patients to meet up with others to share experiences, might that be helpful for you?

I second seeing the physio when you are ready and working out which exercises you can do to both keep yourself physically well but also regain a sense of control over things. Yoga can also be really good for MS.

Well done on your weight loss too - that’s fantastic! And will definitely help you to be a healthier weight as you recover from this relapse.

Take care.

Hey OP, how are you doing?

I've just been diagnosed too.