I’m relatively new to MS, diagnosed in 2020 initially with “very mild benign RRMS” when actually by 2022 new MRI shows 2 legions on the spine and 2 on the brain (the spine were there originally in 2020 and missed).
I’ve been wary of “everything becomes MS” from the diagnosis and I tend to avoid “bothering” the NHS (I know this isn’t the point of the NHS!) - but in the last 3 days I’ve definitely had a relapse - practically fell over and was limping as my leg just didn’t want to respond properly.
I’ve captured my own record (with dates and the symptoms) but should I report this new symptom to the MS specialist service that I was assigned to? I feel kind of stupid letting them know something they can’t do anything about (I’m also about to start DMTs in a matter of weeks).
Thanks in advance.
It is very difficult to distinguish between normal variations in health day to day and consequences of other infections and relapses.
As you are very new to this I would suggest you contact your MS nurse. I feel I underreport and am encouraged to be more proactive. When I had a very clear relapse with new symptoms I was phoned back within the hour. She popped in to see me the next day.
In this case we decided not to pursue the steroid route as we were about to be visited by family from London that was an omicron hotspot at the time.
I am told you “know” with experience but 5 years in I am not convinced of this.
I would definitely report this to your MS nurse. It gives them a clearer picture of what they are dealing with when it comes to your MS. Would say especially with this all being quite new to you aswell, the more information you can give them, the better.
Once you have been dealing with all of this for a bit longer, you will probably know yourself when to and when not to get in touch with them, and distinguish between flare ups and relapses more easily.
Saying that, I still question everything. It can be a hard one to navigate, so your MS teams support will help you. I hope you have a good MS team behind you.