MS Or Paranoia!!!


So bear with me this is a long post!!

Back in 2011 I had this massive black spot on my vision and after copious amounts of tests they advised I had optic neuritis and would need an MRI as they suspected MS - said MRI was inconclusive and quite frankly I was made to feel like I was being paranoid - since then I’ve had recurring bouts of eye issues, feeling like I’m walking on stones and tingling and numbness down my spine BUT I’ve also been told it’s not MS as my symptoms don’t come and go they have always been there (except the optic neuritis which comes and goes) but again I was made to feel I’m being paranoid as I didn’t have any pain with the optic neuritis just a big black spot and blurriness.

Three years ago my brother was diagnosed with MS which seemed to galvanise my GP into going down the MS route again but, I have to be honest, I didn’t want another load of medics making me feel I’m paranoid - however I’ve now got another problem where I feel like I have a band round my throat and it’s very constricting so I’m again going through MRIs and have seen an optic neurologist who this time didn’t make me feel like I’m wasting their time.

My main questions are really as the symptoms don’t come and go I’ve always had the tingles in my hands and down my back and the numbness in my legs and this feeling of walking on stones am I being paranoid? I want to make sure I ask the right questions this time - do people have these symptoms all the time or do they come and go?

Hey Emma, so I haven’t been diagnosed yet but i’m going through the tests. I know what you mean by walking on stones though, it’s very annoying and unpleasant. You know your body better that anyone so please don’t feel paranoid and like most of us, somewhere along the line MS gets mentioned and we get drawn to this website for advice. To me if you’ve had issues before with ON and things still aren’t right and you’re on this website i’d say you aren’t paranoid. Tell you GP you feel like you aren’t being taken seriously and you’re concerned for your health etc. Don’t give up!

Hi Emma Jess,

in terms of symptoms some mine come and go whilst others are always there if only, it feels like, they are lurking in the background.

At the end of the day it is of course up to you to decide to follow-up with your doctors and undergo further tests or not. Having been in limbo since the 1990’s I personally felt I would still press for further tests and my latest MRI has shown an issue that may not be MS but my Neuro still wants to see me again in Feb.

Keep strong on your journey

Kind regards

Hello EmmaJess What might help you is to write down all of your symptoms (those that you’ve tied together as possibly being connected). Write down the dates, as far as you can remember, and any times when symptoms have changed, improved, got worse, disappeared altogether. A kind of timeline. This will help you to get straight in your mind what’s been happening to you, and it will also help when you see doctors as you can explain more easily what you’ve experienced. Don’t worry about seeming paranoid - this is a common feeling when you have random sensory symptoms over time. You manage to live with things until the time comes when you can’t. But don’t be too set on the answer being MS. There are a number of diagnoses that share symptoms with MS. It’s difficult to think of anything else, especially since your brother was diagnosed, but it may not be. Best of luck. Sue