I got the news today that after my recent MRI scan which has shown fresh active inflammation that I do actually officially have relapsing MS. It’s taken well over a year to get here and at last I can now sit back and say to people “see I told you I wasn’t putting it on!”
This journey has been very tiring, emotional and has taken me to go private to get the diagnosis. Believe me, private healthcare is not a cut above the NHS, it’s pretty shambolic and down right frustrating at times. In fact its like a turd, just polished.
Still, at least now I can start on some disease modifying treatment to help me fight back a little. I feel good at the moment and relieved that now I can move forward with my life.
Good luck for the future - a diagnosis of MS is no fun but then limboland isn’t a barrel of laughs either. Either way you have the symptoms and at least now, as you say, you can make a start on some treatment that may well make a difference.
I am just behind you in the merry dance ( waiting to see neuro after an MRI, to see if the diagnosis of probable MS is confirmed ) so would be interested to hear your thoughts on the various treatments on offer. I have been mulling them over in case I do get the diagnosis and get offered the chance for DMDs.
Hello 08,welcome to the last club you never wanted to join.I really admire your attitude and that will help you and yours.You’ve got your very own version of MS even though the NHS will tar you with the same brush as tens of thousands of others.Keep your eyes and ears open and you’ll work out what suits you best.A pinch of salt sometimes,but there are answers around.
Oh,if you get the chance to get on a drugs trial,do it, even if just for the sandwhiches…Not NHS,but leanings towards BUPA and you might trial something which helps you,
hi Number08 it is in some ways a relief to have a hook to hang your symtems oon. I can remember the endless visits to the GP before diagnosis but that was over twenty years ago. hOpe you are OK with it.
I was ‘lucky’ to have a fast diagnosis but agree that the not knowing was probably the hardest part. At least once you have a name for what’s wrong you can start to do something about it. I hope you get onto DMDs soon. There’s plenty of information out there, it can be a bit overwhelming so take your time and think about what suits your lifestyle before choosing. Also remember if the first one doesn’t work out, there are now plenty of options to switch too - nothing is set in stone so you should be able to switch fairly easily.
You seem to have a positive mental attitude and that’s half the battle with MS. Stay strong and look forward to chatting with you again.