Hello my name is Ben and I have just been diagnosed with M/S about 2 weeks ago, following an MRI for sudden onset tinnitus showing some brain matter white spots. Subsequently I had another MRI and neorological test followed by a lumbar puncture and it has just been confirmed. Not sure yet what type I have and I am waiting to see someone about treatment. To be honest I know very little about M/S and what is likely to happen next. Currently my symptoms are mild, limited to the tinnitus, nystagmus and bladder instability with shall we say some ‘mens issues’. I am a 45 year old father of 4, have a busy job and it all feels a bit much to keep calm and carry on!
I dont really know what to expect and what is likely to happen next, I would be very grateful if this group could share some information on what I can expect from a treatment perspective (I am guessing it is different for everyone but any information is much appreciated!)
Crumbs, that’s a shocker for you. Many of us find that MS barges in when we are in the prime of life, building families and careers, starting to pick up responsibility for looking after the oldies…peak grownup-ness, in fact, when lots of people depend upon us and we take pride and pleasure in fulfilling our responsibilities. Then along comes a life-changing dx and the firm foundations suddenly can feel a little shaky. All I can say is that something really quite like normality does usually reassert itself sooner than we expect. The exigencies and demands of family and work make sure of that. If you’re feeling a bit at sea just now - and most of us remember what that feels like - take heart: in general, the shock passes and life goes on.
Welcome to the club we’d rather not be members of. MS does clobber us all in many different ways, with differing symptoms and issues, but we adapt to the challenges.
There are two camps of treatments; those specifically for MS inflammation, and those that tackle the symptoms we get from the MS inflammation/lesions etc.
Disease Modifying Treatments (DMT) can be in the form of a tablet once a day, injections weekly or monthly, or infusions once or twice a year via a drip when you spend several hours in a hospital unit having the infusion administered and post infusion monitoring.
In addition, or instead of DMTs, there are a lot of medications that can be given for specific symptoms, mostly in tablet form, but with some by injection, or even infusion.
What you are offered/prescribed will be down to the symptoms you have and the type of MS you have.
Thank you everyone for sharing the information I know it is very early in the process but great to have some information about what I might expect to happen!
Hello,
Welcome. I have new lesions high up my spinal cord, which probably explains the lhermitte’s sign, tinnitus in left ear and swallowing difficulties I’m experiencing, this year.
I find the body learns to adapt to these inconveniences over time.
There is now a variety of MS treatments out there, hope you find the one that works best for you.
Regards,
JP
It is quite daunting when you are diagnosed and we suddenly have to read up on MS
Can I ask what your diagnosis was?
For instance, I was diagnosed with Relapsing/Remissive MS in 1999
I was lucky to go into remission fairly early on and although I had some symptoms occasional fatigue, occasional inconvenience, lack of facial memory, I’ve had a good tun and only very recently taken a turn for the worse and now have lost a lot of mobility in my right leg
I now have Secondary Progressive MS which I’m getting used to living with
The point being. It’s not the end of the world to be diagnosed with MS and you could have many happy years in front of you
To be honest it is all so new and I have just had a diagnosis of MS confirmed from the MRIs, neurological exams and lumbar puncture. That is so far all I know, I am seeing the next consultant early September so expecting to know more then and see what treatment options might be best. Sorry to hear that you have taken a turn recently. To be honest at the moment I have the few symptoms in my original post but it is the generally progressive nature of the condition and not knowing that I am finding hardest to deal with mentally.