Having being diagnosed with C I S in 2014 I have just been given a diagnosis of M S over the telephone. After suffering symptoms for the past 7 years and not just ticking the last box of the McDonald criteria I feel a bit let down, I haven’t been offered any treatment at this time just told by my neurologist he would see me again in 6 months. I have only been diagnosed because I have suffered a relapse my last MRI scan showed another lesion but this has not been taken into consideration because I have not had a scan on that part of my spine before to indicate space and time. Most of my lesions have been on my spine only one on my brain. Also positive lumber puncture in 2014. I have no faith in my consultant and have not heard anything from the M S nurse.
Hello. I’m sorry you are feeling so bad. It took 22 years to get my diagnosis of rare spinal PPMS.
I had to go right out of my area to get a neurologist who listened to me.
Too late for treatment, so I am now 69, wheelchair bound and reliant on others 24/7.
It is what it is! Xx
I presume your consultant didn’t even mention treatment with you? Phone conversations are not very good for proper discussions, so it maybe it got overlooked, though is on the cards?
However you do need to know at this stage whether treatment is going to be offered, or whether it is not going to be offered, just so you know where you are and what the plans are. As with all things with the NHS at the moment there are delays, even for those whose consultants have discussed treatments it is taking a while to get into treatment, judging by posts on this forum. Maybe the MS nurse is going to contact you. Or maybe not.
If it were me I’d ring the consultant’s secretary to find out if there are plans for treatment options or if your consultant has ruled it out, rather than wait hoping they’ll contact you. If he’s not offering treatment, then back to your GP for advice on how to push for it.
Hi
Sorry you’ve had a crap deal so far with diagnosis and in your dealings with the NHS. I second what Ziola has said, definitely go back to your Consultant, via his secretary and push for an answer on treatment. Also make contact with your MS nurse; sometimes a two-pronged approach is best!
Unfortunately as patients we can’t leave it up to the ‘professionals’, we have to push and advocate for our own interests.