Hi, I just joined this as I wasn’t sure what else to do. I’m 20 years old and I have been under investigation for a year now. I have had a number of tests recently that have pointed towards MS eg. MRI and a lumber puncture. The results of my lumber puncture came back positive for inflammation and so my neurologist has referred me to a specialist MS consultant. However I have to wait till the 26th of November to see them. I’m upset and confused because they haven’t been very clear as to whether I 100% have MS and I feel like I cannot react and am stuck in limbo. I was just wondering if anyone has gone through a similar thing or if I had MS would the hospital tell me straight away.
I’m afraid that you’re in the same boat as everybody before diagnosis. The criteria for a diagnosis is very complex and even the experts are reluctant to do so until they are absolutely certain that they have eliminated every other possibility.
After a year of tests you are, understandably, frustrated and impatient for answers, however your appointment is less than five weeks way. I know that you’re keen to get all the bits of the jigsaw in position so that you can see the whole picture but the end of next month isn’t that far away.
Whatever the diagnosis is, it isn’t going to change who you are and what you want to achieve. Carry on living and don’t put your life on hold just because of what might happen in the future. Limbo is horrible but it doesn’t last forever.
Sorry to hear your situation , as Anthony said diagnosis often takes ages. Hope you don’t have MS but if you do you’ve come to the right website.
My top tip is to keep a record of all your symptoms, how long they last and any appointments you have and their outcome, medication etc.
Write any questions down that you want to ask. Sometimes it’s quite daunting meeting a neurologist for the first time. Take someone with you if you can. If you have got MS, which I hope you don’t, then ask about an MS nurse who can help.
Post and read on the newly diagnose and before diagnosis forum on this site lots of support here.
Let us know how you get on.
It would be an absolute sod if you are in fact diagnosed with MS in a months time. Especially given how young you are.
But, the good thing is that there are lots of effective drugs now available to reduce relapses, so it’s likely that even given the diagnosis, you don’t have to give up your dreams, plans for the future, or your life.
As Anthony said, you don’t change because of a medical diagnosis.
Try your best not to worry too much about the upcoming appointment. Worry doesn’t change anything. Equally, try not to look too much up on the internet about MS, equally that won’t change anything except to increase your fears and worry.
Jen’s advice to write down your symptoms and questions for the neurologist is excellent. Also, try to take someone with you who can remind you about what you need to know and who can be relied upon to remember what’s said, in particular about the next steps, ie what happens next.
Keep talking to us if you can’t get it out of your head, and let us know the results.
Just going to my first doctors appointment ( GP)