Further to my post yesterday, thankyou firstly for all encouraging and helpful suggestions and support!!
My Neuro said he doesn’t need to refer me on to MS specialist as he feels 100% able to give a diagnosis of MS.
What swung it was the timeline over last 25 years or so that I had written and emailed through earlier this week. He said without this he would have been 98% sure, but with it, 100%. He also said that the list showed evidence of a number of clearly defined ‘relapses’ albeit small ones which tells him I must have had this for “Decades”
So there you go. He’s thinking RRMS but will now refer me on to MS Services where they will monitor any disease progression and discuss next steps.
The main drug they use there is Tysabri a nurse told me, but as that is for highly active RRMS that confused me a bit!!
I’m not sure whether I qualify or not, but he said I will be given full post diagnostic support from a multidisciplinary department within the hospital.
I am under N Staffs Royal Stoke University Hospital - which is a Centre of Excellence for MS and does many Clinical Trials in association with Keele University and they have a dedicated MS Centre.
So in as much as anything can be good news - I feel lucky to firstly have had some many worry free years in ignorance (!!) and secondly, to be under what seems a superb hospital for MS.
The other good news - apparently, for a 51 year old, my brain is in extremely good shape with no lesions, just literally 3 non specific white matter changes. Apparently he would expect to see more than that in the average 51 year old
I’m not sure how I should feel. Feel strangely nothing much at the mo - will probably be a blubbery mess at some point!
As you could tell yesterday, I did think (unusually) that you were likely to get this news today. I say unusually, because we really can’t tell from what a person writes, but it was the bit you quoted from the letter you’d had that told me that MS was likely. Essentially the wording swung it for me. In an entirely subjective way.
I think many people feel much as you do, a bit numb, a bit ‘oh yeah so what!’ And a bit ‘oh fack’ (or another similar word!)
Time will come where you do feel ‘it’s not bloody fair, I’ve had good habits through most of my life, I don’t deserve this!’ ‘Why me?’
Then of course, ‘what happens next?’
If you can get Tysabri, take it. It’s the best drug we have with the least side effects and the highest relapse reduction rate (so lowest risk for the best gain). You do have to accept the risk of a nasty side effect, being a virus known as PML. But you can only get this after 2 years on the drug and if you test positive for the antibodies for a virus called John Cunningham Virus (or JCV+). And the doctors and nurses are very assiduous in checking for JCV.
Any disease modifying drug (DMD) has risks which go along with their benefits. When you’ve let today settle down you’ll need to take your time looking at these. You’ll need to decide together with your husband what you’re happiest taking amongst the options you are offered.
I’m sorry you’ve had this news today. It probably will sink in for you soon, and there will be a range of feelings. Feel free to air them on here. We do get it. And don’t mind being sounding boards for your down times.
You’ve already experienced some of the empathy and understanding that this website has to offer but if you have any questions in the coming months there is an well of knowledge to draw upon. Please feel free to drop in and join in, whatever is on your mind.
