How do I stop worrying and just live

Hi everyone, newbie here but feeling a bit of a fraud. I’m 63 and haven’t been officially diagnosed. Had brain mri which led to lumbar puncture and whole spine mri this week. All these tests were triggered by sudden onset of double vision but this is now sorted with prisms in glasses, as I wear glasses anyway. With hindsight, I think I have had rrms-like episodes over the last few years, but dismissed them. Now rrms is being discussed though, I find I am worrying about it, but feel a fraud because I am very lucky to not have serious symptoms and also to not have to cope with work or young family. My question is, how do I put this (potential) diagnosis out of my mind?

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Hi as an undiagnosed person the short answer is you don’t really! Lord knows I’ve tried but it’s always simmering in the background especially when you start to question every ache or funny feeling. I distract myself as much as possible doing the things I enjoy and when those moment crop up I think about it and then say to myself it’s a worry for another time :blush: Your concerns are no less valid or important as say me a mum of three and an ill mum to care for. Our worries are the same really no matter your age or circumstances. I hope you get your answer soon as to what is going on x

Thanks so much for responding! It really helps to hear from someone in similar situation and your words are very kind. I guess just I need to keep trying to enjoy today and not worry about tomorrow! X

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Hello! I am newly diagnosed, but can relate to the feelings you described! I am relatively lucky with my symptoms and my circumstances so far. If a symptom stopped presenting itself, I tried to tell myself that its probably not MS.
But what if it is?
But it’s probably not.
Repeat endlessly all day :smiley:
It sounds like you are quite far into the process which can be reassuring! I tried to just get on with my normal day to day things and consciously told myself to stop worrying when it really took over my thoughts. I am not sure its much help - but sometimes knowing you aren’t the only one helps!

Thanks so much for responding! Yeah, you’re right about the back-and-forth thoughts! I didn’t think I was a worrier, but …!
Glad I joined here though as it definitely helps to know we’re not alone having these thoughts!

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I do not thing there is any magic way of steering round the discomfort you feel now. If it turns out that you do have something like MS, there won’t be any tricks for dealing with that news either in the immediate term. What does tend to happen for most of us is that we learn to deal the new reality and make a good life, but that can take a little time. In the heat of it, as you are, there is nothing for it but to soldier on in the hope of calmer and better days ahead. There isn’t any crafty way of dealing with this well. You are dealing with it as well as you can.

I wish I knew the answer to your question! I’m quite recently diagnosed and I’ve been through - am still going through - similar things. My future…?

Firstly, you’re not a fraud. We all have different life circumstances, different MS symptoms and so on. The burden of knowing that you have, or might have, MS, is very hard in itself.

One thing I found helpful is to face my worst fears head on. This is not for everyone. But one day you may find you have to face advanced illness or even a terminal cancer diagnosis. What would you do about things like power of attorney, or residential or end of life care? It’s not a nice thing to think about, but if you can make a plan, you might be less likely to keep dwelling on it. Not for everyone, but I did this.

The second thing you can do is to do what you can to improve your health. Regular exercise, vitamin D supplements (see NHS website for dose - we are all supposed to take this in winter). Follow up on appointments and don’t let them lose you in the system. If you have RRMS, you should have options for effective treatment if the diagnosis is confirmed. I started going to do Parkrun - I’m so lucky to be able to run and it helps me a lot. I did also find that reading about current progress in MS research cheered me up a bit. But I’d set a strict time limit on the time you spend online, or it takes over your life.

Having got this far - you’ve done what you can to care for the future and sort your health. So the third step is to live for the present. If you are not working, that’s great: all the more reason to use the time to do things you - might - not be able to do later on. So instead of worrying about the future, spend each day doing things you love. Perhaps you could try things that are mentally absorbing, so that your mind is occupied?

You’re not alone facing this prospect. And whatever happens, going through this might make you better able to help others.

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Thanks for responding! I think I feel a bit better just from being able to share my feelings here.

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Thanks so much for this, all very good advice!

Hello - I very much identify with the fraud feeling and so glad to read I am not the only one. I have just joined today having been diagnosed at the ripe old age of 65. I have for a number of years ( starting when I was 40) had symptoms from optic neuritis to trigeminal neuralgia and the old ‘altered sensation’ in my lower leg and side of my face but two scans in with new lesions on my spinal cord although the brain lesions are stable I have been told I have MS and I should have treatment. I didn’t think I would be so upset after all I have no permanent disability and if you met me you would never know but the truth is I am devastated and terrified- less for some reason unknown to me of the physical side but mostly of losing my mind. Because I am older and don’t have children ( we were never blessed as my husband says) and I can walk and go to the gym ( I swim a lot) I feel like a fraud - not really entitled to such an emotional reaction but there it is. Thank for listening and posting. T

Hi Fitzy! I’m “glad” that my post might have helped you a bit, to at least feel that you’re not alone with your feelings. I hope you have read the other replies to my post, and found them helpful. I really think the best advice is to try to stay in the moment and enjoy doing the things that you enjoy, as much as you can, right now, and try not to worry about what might, or might not, happen. I know that’s easier said than done! I still haven’t got a definitive diagnosis, but so far all the test results are still pointing to ms, and my consultant said it is the most likely outcome. But he also said that the main thing is that right now I have no symptoms really, and that he has patients who have been diagnosed for 30 years but have not suffered from any symptoms and so I should just carry on with my life, enjoying it and not worrying about what ifs. Not easy, but I’m trying! I wish you well and hope treatment helps you.

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Hello - thank you so much for taking the time to reply, especially when you have your own worries. I hope you hear one way or the other, if your wish is to know, but for what it’s worth, having not known and now knowing I can say both outcomes bring their own baggage.
I did read the other responses to your initial post in November and they too were helpful.
I am beyond grateful to be speaking to others who are sharing a similar experience which I find to be very calming and makes me feel ‘understood’ ( I know big claims!).
Anyway I wish you good fortune and a good outcome. All the best

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