You are the expert
We have spoken to Nurses, Neurologists and GPs and they all agree that you are the best person to recognise your own relapses – you are the Expert of your body and how it feels.
The person with MS, being in charge of their own relapses, knowing when and how to access the appropriate medical treatment: that’s essential.
Unless you’re in a room full of Neurologists, you’re always going to be the expert.
As a GP, you always have to accept they will know more about themselves then you will.
Understand your Baseline
To be able to recognise when you are having a relapse you need to look back and review your previous symptoms, get to know your body and understand what your personal baseline is, so that when there is a change you will recognise it.
You can measure your baseline by keeping an eye on symptoms and daily activities. Making time to be aware what background symptoms are always with you and how you feel after certain tasks, will make sure you notice any significant changes if they come along.
One of the things I ask in the clinic is if I met you two weeks ago how would you have been? What are you struggling with now that you weren’t two weeks ago?
I walk every day and for no more than 30 min at a time. I can normally tell quite quickly how I feel. How light on my feet I feel, if it’s a good day or a bad day.
A patient with an established relapsing remitting MS often is quite aware of their own body and how it will react.
Talking to others helps
We have heard from Experts and other MSers that talking to others can be really useful, it helps getting a second perspective on your symptoms and helps you feel like you don’t have to go through this by yourself. A Family member, friend, Nurse or local MSer can help you understand your baseline and be there to support you when you have new symptoms.
Knowing that because there is that sense of someone else is involved, and if there is a problem they will help me sort it out, does pull me up slightly.
Some of the stress, anxiety can be decreased a bit when the MSer knows there is someone there that’s listening to them.