Got my letter today confirming diagnosis is RRMS. Active lesions have been found so i qualify for first line DMTs, but I am going to be put forward during an MDT for second line DMTs because of multiple enhancing lesions.
The Brucey Bonus? On the line just after Dear Miss …. Where it says Diagnosis:, it says ……
Relapsing remitting MS
MRI brain scan with contrast shows incidental finding of right anterior clinoid process/plenum sphenoidale meningioma.
WTAF???
How exactly am I supposed to react to this unexpected sudden news that they have decided to give me in the most clinical and unfeeling way? Could this have not come from a short phone call by the neurologist? Is the NHS really that short on time that they think this is a suitable way to inform someone?
Of course I am not supposed to speculate, or google, or research because I could read the wrong information, but exactly what am I supposed to do? Continue being patient when patient is all I’ve ever been???
And yes, I am aware that this could be ok, but also aware that it could not.
I work for the NHS and I am grateful that we have it when many in the world have nothing, BUT SERIOUSLY!!!
Called my neurologist secretary, but no one answered so I’ve left a message.
Sorry you had to find out that way. Ever since the pandemic I haven’t seen or spoken to my neurologist directly. I’m assuming there is a shortage but some patients have direct access to theirs so it’s confusing. I have a scientific background and did a Google search and read tons of scientific literature to better understand what I was looking at when I saw my MRI report. I guess it somehow made me feel a little more in control and I could better advocate for myself when the time comes.
Hi Foxy
You absolutely should research and learn as much as you want about our awful disease. It’s your body after all!
The more you learn the better you will be able to talk with your consultant about symptoms, progression, DMT’s and a treatment plan and to challenge any decisions they try to make unilaterally on your behalf. Don’t take it lying down and if they aren’t moving fast enough, gee them up! Unfortunately it appears at the moment that he who shouts loudest is most likely to get heard.
Graeme
I still have not heard from the neurologist and don’t really expect to.
I got an appointment with my GP, who could only give me a generalised answer, which was that any decisions based on the meningioma are not ones the neurologist can make alone so it has to wait for the meeting. Generally speaking, it is probably benign and they will probably apply a ‘watch and wait’ approach. If I haven’t heard anything within 4 weeks, to give my GP a call and she will chase it up. Just disappointed that the first I find out about it is through a letter, that was actually to my GP in the first instance. I have googled it, but as it is dependant on so many variables, I won’t find an answer specific to me.
I do google things all the time! Just saying that I don’t know how they can tell you to not rely on google, yet aren’t there to answer any questions or give you any further information when you need it.
So, more waiting and more practice on my patience qualities
Apparently I should hear from an MS nurse soon.
It’s been two years to get to this point, so I guess 4 weeks won’t make a massive difference in the scheme of things.
