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awaiting diagnosis

hi all

i came out of hospital earlier this week and am awaiting the results of my lumbar puncture. my MRI showed 5/6 ‘lesions’ and i am currently experiencing double vision, nausea, poor balance, very poor eyesight, sleeplessness, blocked feeling in my throat, twinges in my hands and legs, lethary, irritability and a genuine concern for the future and how i can be a positive part in it. i have suffered with depression for 18-odd years anyway. i feel i can’t make any positive contribution to the life of my family or function effectively until i know what is what.

does anyone know of a good way to cope in the absence of a diagnosis? i want to be a rounded and supportive family man, but at 41 i feel that i can’t get past this. i know and apologise for this sounding like self-pity but i am at my wits end.

any advice greatly appreciated x

Hello,

I’m sorry I’m your first response there seems difficulties with the system.

I guess the advice is to take it day by day. and “be kid to yourself” it doesn’t change anything but gives a chance for you to deal with it mentally.

For the future the current offerins of Disease Modyfing Treaments do seem to be working for those with relapsing MS (http://multiple-sclerosis-research.blogspot.co.uk/2014/08/ms-related-hospitalizations-fall.html). There are more effective drugs in the pipeline.

I hope you get answers soon!

Best wishes.

thanks vithfari. it is really encouraging to know that there are things that can be done. i really appreciate you taking the time to reply to me and hope all is well with you x

I find that telling myself positive things or finding anything to be grateful for, however small, helps. If you nurture this into a positive habit, it will be like a rock to cling to. I’m a 40 yr old mum of one - it is hard dealing with a multitude of symptoms and uncertainty, but forums such as this have been like a virtual waiting room and support network. Be gentle with yourself, as well as kind. I hope you get some clarity and a way forward soon.

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Fluffyollie, if I knew a sure way of silencing that joy-deadening, unignorable, caustically critical voice in a person’s head that gives him/her a running commentary on what he/she ‘ought’ to be doing to be a worthwhile human being and jeering night and day at the many ways in which he/she fails to make the grade, I would be a rich woman. So if that is what your question boils down to, then the answer is no, I don’t know any such way.

What I can say is that the not-knowing part of all this is particularly difficult for pretty much everyone. THere is no trick for dealing with it: it is just a matter of grinding through it and hanging on to the hope that, even if the medical news at the end is not good, one will find a way of dealing with it all, and things will not always feel this bad. And that really is true: things will not always feel this bad.

Hang on in there.

Alison

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You don’t sound self pitying at all, just very worried. Waiting for a diagnosis is really stressful, especially as you’ve got some horrible symptoms to cope with at the moment…but they will go, you won’t always feel so bad.

No magic remedy I’m sorry to say, just try to get lots of rest & when you finally get your diagnosis you can plan the best course forward for you. Good luck.

Rosna x

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Big hugs to you fluffyollie( auto spell wanted to call you fluffy olive ). You’ll get through this, you really will. It’s also good to adapt yourself to how you’re feeling. By not overdoing things when you’re knackerred and by resting when you need to. I hope you feel better soon. You will get good days, and hold on for those. Good things will still happen in your life. You still have a lot to offer and once you get used to how to deal with your body and the symptoms, life gets better. I fought against myself for so long, felt utterly miserable and had to leave a job I loved. But since all that, I can honestly say, I’ve never been happier :slight_smile: I found hobbies to do, I draw when I’m not physically up to activity. I garden and allotment when I can physically do it and I watch loads of TV when I’m totally done :slight_smile: I had to find a way to keep my mind active as I’m a royal pain when I’m bored :wink:

we are all here for you. Don’t forget the helpline if you need to talk to someone. Always here xx

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Many thanks for the kind, helpful, thoughtful and objective responses. Having also phoned the support line I have decide that I have to be positive until the diagnosis comes in and nothing can be done til then. I can’t begin to say how much it has meant to be able to talk to others and.share experiences. I am humbled by.the bravery and compassion I have seen, and am certainly more appreciative of the good things to be grateful for… thanks for everything to those who kindly responded xx

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You’re most welcome. I hope that you can find things to treat yourself to, things that you enjoy, while you wait.All the best :slight_smile:

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No problem, good to hear you’ve got your head round it a bit better. Xx

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