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Scared.

Hey everyone, I was “probably” diagnosed on friday. Neuro said that she couldn’t think of anything else that my symptoms could be so has put me forward for an MRI to confirm. As i’m claustraphobic she has referred me to another hospital as they have an open scanner, and then she said the nest step would be to meet an MS nurse.

She also said that she wanted to stay away from drugs for as long as possible, from what i’ve read the sooner you start on meds the better. Is that correct??

Aside from a few tears i’ve been relatively calm, however the more I read and think about it the more scared I become.

Up to now my symptoms have been quite mild (aside from optic neuritis) and it has just been numbness, slight weakness and skin hypersensitivity (sunburn type feeling).

So, honestly how bad does this get? The eye thing I dealt with quite well but it’s bladder and leg problems that i’m most concerned about. And pain, i’m really scared of being in pain and not being able to do anything about it.

Liza

Hi Liza Im in a similar situation to yourself. I was told before i was diagnosed that i would be put on meds asap after diagnosis but the appointment that i was told it was MS I saw a different neurologist and was told that she didnt want to put me on any meds as i am of a child bearing age. Everyone is different with their progression. My mom also has MS and can still walk, talk, see etc and has had MS for 36 years. Dont get me wrong she has her bad days where she cant get out of bed but the next day she is back to her usual self!! But anothe family member who has it has to use a wheel chair. I guess MS is just so unpredictable which makes it scary and has to be taken day by day. I hope this helps you. Sam x

Hello Liza! I am in a similar situation to yourself. Already been sent for an MRI and they found suspicious looking lesions. I’m now awaiting the MS Team getting in contact to see what the next steps are. Please don’t panic about your MRI. I worked myself up terribly before mine as I was worried about the enclosed space too. Have you ever used a UV sunbed before? It’s no worse than that, close your eyes and try your hardest to relax. Your radiographer will speak to you through a wee radio to check you’re alright as well. They’ll give you a panic alarm thing to hold incase you start to become upset and they’ll get you out asap. As for the noise…it’s no worse than the buzzing of a tattoo needle and you’re given ear plugs to wear too. It’s the thought of having one that’s much worse than the actual experience! I hope it all goes well for you and best of luck! Claire xXx

Hi Liza I’m also in a very similar place but have also have MRI and L/p which have led to MS diagnosis as symptoms alone only quite mild. I am also feeling scared, having been calm for the last 3 weeks (had diagnosis early July). My neurologist has said no mess for now as about a quarter of people don’t have further symptoms, but if I have another episode we talk about it then. I have been taking vitamin D, B and evening primrose oil as had read this was worthwhile, am sure there are mixed views but felt like I was doing something. I have read recently about diet helping, but the diet sounded pretty dramatic, no dairy or meat, and I feel I need to read up about it more before doing something that’s drastic. I have also read that it’s good to exercise if/ when you can to start off in a better position so have started a bit of running. It is hard to be facing something this unpredictable, the only thing that put it in perspective for me very recently is when a friend told me someone her husband works with had been desperately hoping for a diagnosis of MS but has got motor neurone disease instead. Xx

hi I’ve just had my mri (3rd August) don’t have appointment for follow up with neurologist, just wondering how long anyone here may have waited. I know it’s only been 3days but the worry of finding out isn’t helping atall.