It is 2 weeks saw I saw my neurologist. We talked, he did an examination and said the words I had been hoping for (weirdly!!) - "you’re not bonkers - there is something very wrong with your central nervous system. I asked him if it could be MS and he said yes, all my symptoms and exam fit. He said it could also be stroke, tumour and a couple of other things I’d never heard of and can’t remember but that he didn’t expect to see any of those on the MRI. So now I await my “urgent” MRI and am in a mix of thoughts. I flick from thinking right I can deal with MS, to being worried about having a tumour or stroke, to actually thinking perhaps I’m making it all up and exaggerating it all!! Its a strange time in my life. My Mum bought me a walking stick at the weekend mostly for help with balance, but I’m embarrassed to use it - not because of how I look or anything, but because I feel a bit of a fraud - I don’t know what if anything I have!! I would love to hear from anyone that went through these kind of thoughts too! Thanks xx
I have to say I’ve felt the same as you - I wonder if it is all in my head, and to be honest there was some kind of relief that my neurologist said my symptoms needed to be investigated. He only mentioned MS to me although it did occur to me that there might be something nasty going on - although my MRI came back showing nothing out of the ordinary. It is a strange time, waiting for your MRI to happen because there are so many ideas and thoughts going through your head and your emotions can be all over the place.
I know just what you mean about feeling a bit of a fraud - until you’ve got a firm diagnosis it could be something or nothing (even if you know deep down it is something!). If you need to use your stick to help with balance, then I would say use it - there’s no rule to say that you have to have a diagnosis of any kind to use something to help you keep upright, is there?!
I hope you don’t have to wait too long for your MRI, and that you get some answers soon!
I totally relate to your feelings. I got my diagnosis 3 weeks ago, relieved it is MS and not something even more sinister. Also the feeling of being a bit of a fraud, my symptoms most of the time are manageable and have little impact on my daily life. Then when the symptoms raise their heads (usually when I’m tired, exerting myself or hot) I struggle to walk far and I have made the decision to get a stick. I don’t want to look like I’m attention seeking either??? I have decided to get a hiking walking stick that fits in a bag, so its there when I need it and try not to give away the fact I’m slightly disabled (though this will be obvious when I try to manouvere my pins). I really dislike the idea of using it and people changing the way they perceive me.
Am I exaggerating it? Am I going mad? Am I manifesting these random symptoms? Is this all psycosomatic? Am I wasting doctors time? These are questions that went through my head constantly until my symptoms would show and I would know its not normal to experience a dead leg which my brain is telling to lift, but the leg is only partially responding. Even since diagnosis I still ask these questions, I think I’ve got so used to the symptoms that I see them as normal??? I’m so confused at present.
What tests have you had in addition to the MRI?
I had two MRIs (both show spinal cord lesions), blood tests (all negative, slightly low on B12), evoked response test (negative) and lumbar puncture (positive CSF).
At least your neuro has told you you are not going nuts
I feel a bit of a fraud - I don’t know what if anything I have!!
Ah! Cazjc I know that feeling. Since October I’ve been thinking am I ill? Is this just going to disappear and leave me looking foolish? But - it IS there. I am having mobility problems and my brain function is affected. There, I’ve said it and written it - but it’s still hard to take in. Best of luck with the MRI and I hope it answers some questions for you. I’m waiting to see the MS specialist as my spine MRI shows lesions, my brain MRI shows ‘abnormalities’ (whatever that means) and the EP test indicates poor link between my left side and brain. I’m just hoping that a diagnosis will lead to some type of treatment plan. Something solid that I can show to the HR Department and say, look, I told you I was ill.
If the stick helps - then use it! And if anyone comments - hit 'em with it