Finally got the neurologist to commit to a yes or no and he said yes so here I am with RRMS and feel at peace with myself finally that I’m not a paranoid hyperchondriac.
5 days of strong steroids now and see what the future holds.
he does not want to start me on any meds’ until I one day have a big flare up as he feels it’s settled at the moment as no mri changes in a year.
hope you are all having a lovely day and hope you don’t mind me sharing xxxx
Hi Louise, I’m glad you now have a dx. It does help 'specially when trying to explain to people what’s wrong!
Hope you carry on for the foreseeable future not needing a DMD, take care
AngC x
Hi Louise
I answered your other thread before I saw this one.
I really am glad you’ve finally got the diagnosis. Just as I said before, watch out for the low points.
But I’m a bit mystified by your neurologist. He would rather you had a big relapse than take DMDs which should prevent you from having a big relapse? Does this make complete sense?
I understand the view that your MRI picture hasn’t changed in a year so you may not get a big relapse for years or ever. But if you suddenly do get a humdinger, you’ll be cursing that neuro.
And you must have had a relapse if he’s prescribed steroids. So the brain MRI may not have changed, but you can’t say your MS is completely silent.
In your position, I’d take the steroids, get yourself feeling good and acclimated to the diagnosis. Then take stock of where you are and how you want to tackle the disease.
Sue
Hi Louise. I’m pleased you got your diagnosis today even though it was not great news at least you know where you stand now and you can move forward in getting the best care and support you need. Have you been assigned an MS nurse? What happens next for you.
I’m really none the wiser. my head scan shows nothing new which is good but because of my pins and needles and leg pain he wants me to have spine MRI. He said he could tell me for sure if I had a lumber puncture. I told him I had already had one but he was not aware of that. The results weren’t in my notes so he said he would have to chase it up. He was very good with me answering all my questions but I’m still no clearer.
Hi sue, he has given me steroids because I’m having pins and needles issues on the left hand side of my body that have only been a few weeks so I think he’s going to try and knock it on the head quite quickly. With regards to the big relapse he thinks im only going to be a mildly effected person as I’ve had no major symptoms just rumblings over time and may never get it as badly as some. My dads ms came on over 5 years and he has stayed very wobbly but not changed in 20 years so he thinks I may be the same. He’s not ruling out giving me treatment though if I need it in the future just think he wants to wait and see and I’m happy that it’s finally diagnosed and will get help quick if I need it. Just want to say Thankyou to you as you always have the best advice and always find the time when you must be feeling rubbish yourself xxxxx
Hi! I’m so sorry you are no closer to getting answers the uncertainty is horrible. How long ago did you have your lumber puncture??
My head scan also showed no changes but I was diagnosed because of family history and still the lesions that are present and symptoms over the years, he’s decided not to do a lumber puncture but got evoked potentials tests next week.
no mention of an ms nurse and got some steroids and watch and wait for a relapse before I start treatment.
So hope you get some answers soon and lots of luck xxxx