Forum

New to MS

Hi All,

I have been diagnosed with clinically isolated syndrome about 5 years ago. I had a LP and plenty of MRI scans. I have been having more symptoms and when I went to the doctors they sent me to the Neurologists. I saw the nurse first and she gave me LOTS of information about MS and has asked the consultant to see my sooner than my yearly check up. Although I have not yet been officially diagnosed with MS I am assuming this will be the final diagnosis.

I have a few questions about MS and wondered if anyone can help.

Firstly, are you still able to drive and have MS? I drive for a living so I am wondering if I will have to leave my job due to my illness. Also, in regards to work, they are asking me to complete a health and safety questionnaire. Can this be used if my employers want to get rid of me and get someone else in post?

Also, we would like to start a family. I have read that there is higher of passing on the MS gene if a parent has this. What have other people done or what do people think? I don’t know if it is selfish of me to start a family and pass this gene on.

To be honest, its all a whirlwind at the moment. I am gutted, upset and unsure of my future now! Where is that magic wand???

I would appreciate peoples views.

Kind Regards

Spuddle!

Hi Spuddle, welcome to the board.

We can all relate to things being a whirlwind & upsetting, & being unsure of your future - we’ve all been there, or are still there. The futures never predictable at the best of times, but there’s so much variability with MS which only makes the future even more of an unknown. And our brain’s rarely like great big unknowns - they can imagine all kinds of monsters lurking there!

As for driving, yes you can definitely drive. I’ve heard of very few people who’ve had to quit. I use a wheelchair, and drive an automatic and use hand controls. You’re legally required to tell the DVLA though. They’ll send you a medical questionnaire, which will take them an age to deal with. It’s possible you may get a 3 year licence which needs renewing every 3 years, but obviously I’ve no idea what they’ll say. You need to inform your insurance company too. If they attempt to increase your premium as a result, then politely inform them that they’ll be breaking the law if they do that.

As for your other questions, I don’t think I could answer. Could a H&S questionnaire be used against you? I’d have thought not as I reckon that would be discrimination. They’re legally required to make reasonable adjustments after all, not look for ways to fire you. Still, it wouldn’t be any harm to speak to your union if you have one, or go to your local Citizens Advice Bureau.

I’ve heard too that having MS increases the likelihood of your child having it, but I’ve no idea how much more likely it is. It’s worth saying though that it will only be a tiny percentage, so they’re far more likely to not get it. But I can appreciate how big an emotional choice that is to wrestle with.

Sorry I can’t help more.

Dan

1 Like

Hi and welcome to the site.

I haven’t got anything really to add to Dan’s excellent reply. It does take a while to come to terms with a diagnosis of MS so take it easy on yourself, one day at a time.

There is a genetic predisposition to MS but it’s not hereditary. I am the only person, to my knowledge, in my family with MS. Whether to have children is not an easy decision but I would talk to your doctors about it.

Life does go on with MS albeit differently.

Good Luck!

Anne

HI SPUDDLE AND WELCOME.

FIRST OF ALL, I JUST WANT TO SAY THAT I TOTALLY UNDERSTAND WHERE YOU ARE COMING FROM WHEN YOU TALK ABOUT BEING IN WHIRLWIND. I’VE BEEN DIAGNOSED JUST OVER A YEAR AND REALLY I’M JUST GETTING MY HEAD AROUND IT BUT THERE IS SO MUCH SUPPORT OUT THERE. ONE OF THE MOST IMPORTANT THINGS I HAVE FOUND IS THAT IT IS SO IMPORTANT TO ASK AS MANY QUESTIONS AS YOU NEED TO AND ASK FOR HELP WHENEVER YOU NEED IT.

REGARDING WORK, YOUR EMPLOYERS HAVE A DUTY TO MAKE REASONABLE CHANGES (IF REQUIRED) TO YOUR PLACE OF WORK TO ENABLE YOU TO CONTINUE TO DO YOUR JOB. CHANGES FROM ADAPTING YOUR WORK STATION (IF YOU HAVE ONE) OR SIMPLY PROVIDING MORE REST BREAKS FOR YOU THROUGH THE DAY. I WOULD AGREE WITH DAN AND URGE YOU TO SPEAK WITH YOUR UNION IF YOU HAVE ONE, OR THE C.A.B.

REGARDING HAVING CHILDREN, AS ANNE SAYS, THERE IS A GENETIC PREDISPOSITION TO MS BUT IT ISN’T HEREDITARY AND THERE ARE STUDIES WHICH SUGGEST THAT CERTAIN MS SYMPTOMS CAN GO INTO REMISSION WHEN YOU’RE PREGNANT BUT THE BEST THING YOU CAN DO IS TALK TO YOUR DOCTOR.

I KNOW THERE IS A LOT TO TAKE IN, ESPECIALLY WHEN YOU’RE STILL IN LIMBO BUT JUST TAKE YOUR TIME AND REMEMBER THAT WE HAVE ALL BE THERE, WE ALL KNOW WHAT IT IS LIKE AND WE’RE ALL HERE FOR YOU.

I HOPE THIS HELPS.

I WISH YOU LUCK AND IF YOU WANT TO CHAT OR ANYTHING, MESSAGE ME AND WE CAN ARRANGE SOMETHING.

TAKE CARE OF YOUR SELF.

TOFFEE.

Hi there,

Not much to add that hasn’t already been said but when I was diagnosed I already had 4 boys aged 20, 13,12 and 5! They certainly keep me on my toes and very active, I’d say in my circumstances the children have been a help not a hindrance. One thing I would bear in mind is if you are asked to take part in a clinical trial, they are usually long - up to 4 years and you have to take birth control (well at least with the one I’ve been asked to take part in) so that would be something to consider for the long term.

Jane x

Hi All,

Thank you for your responses! They have put some worries at bay so thank you very much for spending your time replying!

I completed the form today with my employers, they were supportive, which was positive!

Just waiting now for the consultant!

Thank you all once again! I do appreciate it!

Spuddle

1 Like

Hi Spuddle and welcome to the club no-body actually wants to join.

Just to add my tuppance worth. I’m diagnosed 11 years but not on medication - still drive, still go to gym (when I’m not being lazy). You do need to tell the DVLA and insurance but mine didn’t change at all.

No-one else in my family has MS - not even a sniff so don’t worry too much about passing it on - there is a higher risk but its not set in stone. Have a look at the news and research section on this website and also speak to your neurologist and MS nurse.

Take care

JBK x