I was diagnosed with RRMS last week, it was a very quick, unequivocal diagnosis and came as quite a shock as MS wasn’t really on my radar. So I just wanted to ask two questions:
Does it take a while to come to terms with fact that you do not have 100% control of your body? I’ve been getting so frustrated and angry with myself for dropping things, knocking things over, misjudging distances etc. I’m finding it hard to accept I can’t control this at present It is not severe, but still frustrating
I also wanted to ask if it is common to experience and exacerbation of symptoms when you are first diagnosed? As a result of the stress and emotional turmoil. I appreciate everyone has a unique experience, with many living in limbo for some time, but am hoping to find some commonality As I said this diagnosis was a huge shock, even though I had many symptoms I had attributed most of them to anxiety and epilepsy. Thanks for reading, any input would be great
makes it easier to know I’m going through a normal response! Will go easy on myself and let myself be angry. Am starting Tysabri infusions next week which I hope will agree with me but the Neuro and MS nurse said it usually takes 3-4 months to start feeling better with this treatment, that seems like such a long time!
Thanks so much for your replies, your validation means so much, my family aren’t sure how to react and if I discuss symptoms they’ll often chime in saying “oh but I have that too” which is well meaning but a huge empathy blocker at the same time.
You’re so right Alison, having no one to blame just makes it all the more infuriating, today every time I heard my foot scrape on the pavement I wanted to yell at someone.
Pops if you don’t mind me asking, how long were you on Tysabri before you noticed a difference?
So true. A lot of things in MS life look to the uninitiated to have an analogue in normal life (‘I’m tired today too; I’m always dropping things too; I’m terrible at remembering names too; my legs feel like lead today too,’ etc etc). So yes, people are trying to be empathetic; little do they know that all they are doing is unwittingly showing that they haven’t a clue, thus making the person with MS feel even more isolated from normality.