Forum

New to MS

Hi

I am Karen i am new to having Ms and i am finding difficult to cope with Ms and feeling like i have been hit by a truck with my world being turned upside down. How are new suffers to Ms coping and how do they live with it and their partners cope.

Hi Karen,

I too am newly diagnosed.

to be honest it totally sucks ass, 2weeks ago I was on my 8th week of optical neuritis.

on my follow up eye doc apt he sent me straight to see a neurologist who booked me an emergency MRI 2days later I get the shocking news.

so far I have been moody, a lot of self pity, anger, & lots of made up/new symptoms. (Neuro said I prob had the tingling before but ignored it, fatigue is defo a newbie tho, prob the steroids)

however I have the plus side of amazing friends & family inc a 12year old diva who has now turned out to be my rock!! My partner is constantly reassuring me & I know at some point I will have to do the same back but atm I don’t have the energy, he is amazing tho!!

Iv yet to go back to work (2days I worked from home then decided I needed to deal with this so had this whole week off)

i cry/laugh daily I’m sure at some point we will get over these feelings of grief, until then I’m plastering a smile on my face and sleeping whenever I like!!

Rach xx

I’m not newly diagnosed, but I 100% go along with Rachel’s opinion that it ‘sucks ass’.

I suspect you are both going to be going through an emotional roller coaster over the next few weeks / months / years. It takes as long as it takes to ‘accept’ that you have MS. And after 20 years I can tell you I have not ‘accepted’ it nor ‘come to terms’ with it. MS Is crap.

People say there’s all those stages like denial, anger, acceptance. I say knickers to that. It’s bloody bad luck.

But life does go on. And at least having been diagnosed, you’re not living the absolute hell that is limbo, thinking you probably have MS, being tested, and told it’s not, or it’s not yet, but might be in the future.

And now that you are diagnosed, you can get some disease modifying drugs (DMDs). These are designed to both reduce the number of relapses you have and to reduce the severity of relapses. Their efficacy varies, as do the potential side effects. Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

This tool will give you the run down on all the DMDs that are currently available. You may find that your options are limited, it will depend on how active your MS is, the view of the neurologist, and also what prescribing centres have been set up locally.

You should also have been given contact details of an MS nurse, if you’re lucky and you get a good one (to be fair, I think they’re all pretty good), then he or she will help you to get onto the DMD that is right for you. S/he will also help you to get in touch with other local services, depending on what you need, from physiotherapy to bowel and bladder and OTs.

All the best.

Sue

Hi Rachel

Thanks for the reply its good to hear from people that are going through the hell like me having to learn to cope with the roller coaster that Ms is.

Karen

Hi Karen,

Life chucks various bits of “stuff” on our paths, some good and some not so good. MS is one of the vast range of crappy things. Within the MS group there is a vast range from OK to really bad, None of us know exactly how things will work out. By having a diagnosis you can now give your issues a name and research what you can do to help yourself and what support is available. One of the “good” things is that lots of people have been down similar paths, so can help & support you. Great advice from Sue, my suggestions are

1: build up a network of friends / family / medical professionals that you trust

2: whilst being angry scared & upset are valid responses, do not waste too much time or valuable energy.

3: enjoy the good stuff

All the best Mick

Dear Karen, I too am newly diagnosed. Six weeks. Like being shot…takes your breath away and you obsess with thinking the worst. I cried for a week and was petrified. I am calmer now. Have shared it with my family. I still cry when I am worried. But I have tried to take control. Reading ‘overcoming multiple sclerosis’ George jelinek, and I am dieting and exercising. I try not to imagine the future, I just live in the present and find that everything is ‘heightened’. We tread on egg shells, and say we love each other a lot! I am certain that things will calm down. I am waiting to see the neurologist. Love and good health x patience