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
I was diagnosed in September last year. I’m nowhere near coming to terms with it. It could take years.
The worsening of symptoms could be down to the stress of the situation or simply a worsening of the condition but certainly the worry will not help. Your MS nurse will help.
I wish you all the best and hope you improve very soon.
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!
But according to the Neuro, I’ve had MS for 10 years without knowing or suspecting, so I guess 3 months isn’t such a long time in the great scheme of things
Its helped me in that last year I had 5 relapses in 9 months and since being on Tysabri I’ve only had one relapse.
I still feel rather weak and my walking is poor but its certainly helped and I’ll keep on it despite being JC positive as I have not had any side effects.
Crikey, yes. And there isn’t anyone to blame either, so no surprise that we rage at our bodies for letting us down like that!
[quote=“Persephone”] …is it common to experience and exacerbation of symptoms when you are first diagnosed? As a result of the stress and emotional turmoil.
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I think this is also something most of us will recognise. You are definitely not alone.
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.
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