Hi there, my name is Cate and I’ve just been diagnosed with MS this year — however, it turns out that what the doctors thought was myelitis when I was 19 was actually the first of many relapses — I’m now 37 and finally diagnosed. Just waiting for my MRI to see progress and finally begin treatment. I’d love to chat to anyone with MS — I don’t know anyone with the disease and haven’t been brave enough to venture onto forums until now. I hope everyone is well. Cate x
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Crumbs, CatieB, that’s been a long road.
I suppose the good news for the day is that your RRMS has been relatively mild, at least until recently I hope that whatever relapse finally secured your dx is on the mend.
Good luck with the next part of the journey that you didn’t know you were on.
Hi Alison, thank you for responding. Unfortunately it hasn’t been mild (paralysed bladder & bowel etc.) the doctors have just been useless! The next step is to see whether this is still RRMS or SPMS now. Fingers crossed for the former! How long have you had MS? X
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25 years or so. Dx at 38. No symptoms until the year of dx. A different path to yours.
I am really sorry to hear that you’re in bladder and gut trouble - those are horrid things to go wrong. I hope that you get the medical support you need to help you through this bad news and difficult-to-handle symptoms.
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Hi Cate, like you I’m fairly new to this. I had a fall in June of this year. As I banged my head I was advised to go to Minor Injuries Unit. The gave me a CT scan which they though showed I’d had several previous small strokes. They kept me in the stroke ward where I had an MRI 1 day, then another the day after with dye, apparently to show the scars up more. Following that I was diagnosed with MS. I have secondary progressive following the fall, but have had MS for over 20 years. It all makes sense now, all the falls and dragging foot.
If you want to talk, I’m very happy to. This is horrible, I only just starting to come to terms with it. The other day it occurred to me that this is for life.
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Hi Alison, thank you so much for your message, it means a lot. If you wouldn’t mind chatting I’d be so grateful. They’re worried that after 18 years of no treatment and my sudden onset of many symptoms that I’m SP also which is so scary. I’m sorry you’re going through what you’ve had to go through, too — I’m also here to chat if you want to xxx
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I hope that there are good treatment options for you, whatever their thinking. It must be hard to get your head around, finding that you’ve had it all those years and you didn’t know. Or at least you didn’t know that you had MS – presumably you suspected something was up but never could get to the bottom of it? Either way this must be an awful shock to your system.
Hi Catie, no problem I don’t need any encouragement to chat. My overarching means of coping is - take it one day at a time.
Try to be kind to yourself, noting all you achievements ( no matter how small) rather than what you haven’t managed to do.
I would never have thought of peeling a potato an achievement but that’s where I am now.
The other thing I have problems with is accepting help. Take all that you can.
Got to go now, my physiotherapist has just arrived. Take care, Alison
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