Hi everybody. Just got diagnosed yesterday with ms. In one sence i am relived to know i am not going around the bend, but a little concerned how i will look after my wife and three children. Not sure what to exspect?
Hey Paul. How are yer? Sorry to hear about dx. Welcome to a very shit club. So what’s up? Numb limbs? Eyes gone stupid? Snapping at your wife/kids? 24 hour headaches? Walking like you’re pissed ? Yes, yes and yes ? I don’t know what your circumstances are dude, but I’m in the same boat. Andy
Hi there, sorry to hear about your diagnosis. Was it a big shock? Did you suspect? Mine came pretty much out of the blue, but like you, was relieved to know I wasn’t going mad after having weird sensory changes. Yes, it’s a rubbish time being diagnosed, but treatments are improving, there’s a lot of new research going on, and there are a much bigger range of treatments than when I was diagnosed 13 years ago. Are you relapsing remitting? What are your main symptoms? Mine are largely sensory/optic neuritis. This forum is great for finding out more and for reassurance when/if new symptoms emerge. One piece of advice - do not randomly Google about MS - it will only freak you out. Stick to this site and the NHS trusted links. Look for all the support that’s available, from reputable sites, especially emotional support, and let your MS nurses know how you are feeling and about all your concerns and worries for the future - it’s important to get it all out there! They can lend a very sympathetic ear I have found. Remember - you can still have a good and fulfilled life with a diagnosis of MS - you are the same person you were before the dx. There may be changes ahead but many people can and do adapt. Many symptoms can be managed and treatments can delay progression.
hi paul
has your neuro given you another appointment to discuss the next steps?
a formal apointment to diagnose you and decide which flavour of ms you have.
if you are RRMS you should be offered one of the DMDs (disease modifying drugs)
you should also be allocated an ms nurse (wonderful beings who can help with almost anything).
you are the same person you always were, just facing extra challenges.
your wife and kids will have to accept it just as you do.
it’s a lot to take in so i’m not going to say any more now.
you can post questions on here as they arise.
carole x
Hi Paul,
Carole’s last sentence is the best advice you can get.
Stay with this Forum and whatever you have to deal with there will be someone here who has already done it and will be only too happy to offer you the benefit of their experience.
Best wishes,
Anthony
Hi Paul
What lousy timing, diagnosed just before a bank holiday, so there’s a few more days available for you to worry yourself silly about the worst that can happen.
As the others have said, you probably don’t know yet what variant of MS you’ve been diagnosed with. About 85% of people are diagnosed with relapsing remitting MS. Sometime this diagnosis is changed later, but the chances are you will be given an RR diagnosis in the first instance.
This is basically because until you’ve had MS for a while, it can be unclear as you whether you’re having remissions from attacks and because there are now a wide variety of disease modifying drugs (DMDs) available for RRMS. The point of a DMD is to reduce future relapses and to minimise the severity of relapses. Once you have another appointment with a neurologist, you are likely to have a variety of DMDs proposed for you to consider. What you can do in the meantime, is have a look at the various DMD options: MS Decisions aid | MS Trust
As Fizz said, don’t randomly ask Dr Google for help as he’s a crap doctor and will frighten you. But the MR Trust has a number of very helpful guides to various aspects of MS, as does this site.
Above all, try not to panic and worry about supporting your family. MS nowadays is not an automatic route to serious disability. It obviously can lead to disability, but the majority of people are now able to take DMDs and continue a productive, able bodied life, including working.
Sue