1st MRI results

Hi all I’m due to get my 1st ever MRI results tomorrow. My head’s a bit melted. Part of me is terrified they will find something and the other part is scared they won’t and I’ll be no further on :frowning: Really strange feeling! Just a wee question - if nothing to suggest MS is found, is it people’s experience that the Neuro will do further investigations to see what’s going on, or is that as far as they go? Ive no idea what to expect. Any info/experiences appreciated, I feel really unprepared. I realise MS is only one possibility to explain my symptoms and I feel all tests have been geared towards that and am worried I’ll be well and truly stuck in limbo if nothing MSish is found. Sorry I’m rambling - any advice would be great. Thanks x

I can only give my first MRI experience. I went several years with a diagnosis of a trapped nerve, before finally my GP arranged for an MRI as the condition had not alleviated at all. I genuinely thought nothing of it as I also had same diagnosis from a private consultant too. Was given an appointment to see a neurosurgeon about 5 weeks after they had results I went in thinking it was an all clear due to time of wait (not realising that was actually quite rapid response), but going in and was told I had Chiari malformation and syringomyelia (which was odd as mother in law had not long had a king charles spaniel and chiari came up in discussion).

It was an odd feeling being told something was actually wrong, as for years felt like a hypochondriac, but it was an initial relief that it wasn’t psychological, so I was kind of content for the rest of the appointment, whereas my wife and family it was like I was on death’s door when they found out :P. After a few days, and research later, it sunk in and for once I could plan ahead on what I can do. Unfortunately, after several more MRI’s since, and decompression surgery, other issues arose, including numerous white lesions, and new symptoms, I’m back in the camp I was at the beginning…I’m not sure what is happening again.

This may not be a reassuring story, just give you an idea that you are not alone in your thoughts.

Hi swanjackal Thanks for the reply! I had never heard of Chiari malformation and syringomyelia, had to Google what it was! I’m sorry to hear that you’re on a bit of a rollercoaster and I hope you will get all the help you need to resolve the current state of play with your health. I appreciate you sharing how your diagnosis felt like a relief- I’m pretty sure I’ll feel the same, initially, if I get a diagnosis. Feeling like a hypochondriac is not fun - even when you know you’re not! Best wishes to you and I hope better health is on its way

Hi Talulla, When I got my first MRI results I naively thought I’d either be told I had MS or told I didn’t - I didn’t realise at that stage that it’s not that simple so was very unprepared for my appointment! If they find something on your MRI it’s likely they’ll want to do further tests to “firm up” the diagnosis as my neurologist puts it, so you may leave the appointment slightly further down a path towards MS but still with no real answers (which can be really frustrating and we all know how that feels!) If they don’t find anything on the MRI I’m guessing they may want to do tests to look at other options, as well as perhaps doing a further MRI in around six months in case the lesions haven’t developed enough to be seen yet. The most important things you can ask are What’s happening currently and what will happen next - you want to leave the appointment knowing there’s a plan of action. If you think some of the answers are a bit vague, ask for more detail - I hadn’t realised how vague my neurologist had been at my first appointment until I had lots of questions fired at me afterwards by my mum, so now I keep asking until I feel like I really know what’s going to happen and why. Good luck at the appointment and let us know how you get on :slight_smile: Sarah

Hi Sarah Thanks! That’s really helpful - this is all brand new to me so I’ve not had much of an idea what to expect. Hopefully I’ll have my wits about me tomorrow and ask all the right questions. Not easy as I’m usually a flaky eejit lol I’ve a barium swallow test aswell this month so at least there s some other investigations going on and hopefully some answers will follow. I’ve had this MRI thing hanging over me since November, as there was a mix up with my referral! It’s been a long 6 months - but have to prepare for the idea that it could take a lot longer still. Thanks again, I’ll let you know

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I can’t help much but I completely understand the part about being worried they’ll find something and also being worried they won’t!

Its horrible!

Hi Talulla

How did you get on at your appointment?

I know the feel you describe well! After my MRI, my GP just received a letter saying that it was all clear but nothing else, they made no attempt for further tests.

I had to request blood test from my GP to rule out other issues and after these came back normal it took another appointment of me breaking down (not a normal state me for) in front of the GP saying I thought I was going mad, having symptoms for 6b months but all tests coming back as normal.

The GP has referred me back to the hospital for a second opinion and I hope further tests.

I hope you have received some sort of answer to your symptoms.

Lisa x