Dx nearly three years, Tysabri as my only DMD since December 2014. Presenting symptom was severe ON and then further relapses affecting left leg.
I feel very fortunate because I haven’t relapsed now for over two years, but in the last week I have noticed new symptoms and wondered on others’ opinions. I have contacted MS nurses and waiting to hear.
This time my symptoms have been quite subtle, I’m always very positive so find it quite easy to say “I’m fine” because I think I am but something doesn’t feel right. It started 7 days ago with an electric shock sensation which made me jump, and then since I have had lots of tiny shocks in my legs, arms and head. I am also getting some deep sensations in my legs and arms sporadically but these are by no means unbearable, and feelings in my legs but I wouldn’t say numbness as such. My legs are working just about fine I think. What is going on is very mild I feel but something isn’t quite right. As I’m not really used to new relapses I wonder whether this sounds like one or not. I haven’t had any infections and otherwise very well too.
An apparent ‘nothing’ can quickly degenerate into a ‘something’ and then if you’re unlucky, an ‘everything’.
I am not trying to scare you, be a gloom and doom merchant, or god forbid be a pessimist… but you need to be proactive in this life, now that you are a card carrying MS’er!
If you will not speak up for yourself, who will?
I say of this from experience; my mother would always respond “Fine!” when asked how she was, even when it was painfully obvious that she was anything but.
The best and most simple advice i received subsequent to diagnosis, is to treat yourself like royalty.
So strap on your tiara and demand the best of all things; tons of rest and relaxation; nothing but the finest foods and beverages; no stress nor worries; only the absolute best and most immediate tending to your every want and need, they very moment you suspect something needs to be attended to!
ROYALTY!
MS is your complete permission to be a right royal pain in everyone’s arse! (but none of this is to say you can be a lazy bugger… we live in the real world and so you still gotta pull your weight )