Forum

Worried and scared

I have recently seen a neurologist and have just had an MRI and I am waiting for follow up for my results , I have a numb toe and intermittent numbness of my right leg and right hand/ arm I often have to blink to clear a film over my right eye and have double vision , I feel dizzy if I am sitting quietly I was really forgetful for a while and would stop half way through a conversation as I had lost my train of thought. My neurologist thinks I have ms which is a shock but not the worst scenario as I had myself convinced I had motor neurone. I am an experienced nurse but when it comes to taking my own advice my common sense goes away and a headache becomes a brain tumour. I have read too much and I am looking for helpful people to help me see things a bit more clearly . What is the difference between the two am i right to think it may be mnd or am I being silly. Please help I am managing this on my own as I do not want to worry my family but would be so grateful for any information or advice . Thanks for listening :slight_smile:

Hi Anon,

I hope you don’t mind me saying, but first off, I don’t think it’s a great idea to be managing this alone without family. Obviously, it depends what family means in your case: I wouldn’t choose to involve young children or a frail elderly parent at this stage, but if you have a partner, isn’t this exactly the kind of thing they’re meant to support you with? How would you feel if they were ill, and hadn’t told you? Don’t you feel they have a right to know what’s going on with you? The chances are, they’ll have noticed something anyway. Even if you’ve managed to conceal you’re hospital appointments, I can’t think they won’t have noticed you’re not your usual self, and seem either ill or preoccupied with something. They may be worrying too, not knowing what the problem is, or why you won’t speak about it. I’m sure it would help if you could take a deep breath, and put them in the picture.

If it was at an earlier stage, and you had not yet been referred to Neurology, or had any intimation MS was the suspect, I think you might do well to keep quiet until more was known. But I think it’s gone beyond that now, and it’s time to take somebody into your confidence - even if it’s only one person: a partner, good friend, or whoever.

Unfortunately, MS is one of the hardest diagnoses to make, as no test can prove 100% that you have OR haven’t got it, and there are at least 100 lookalikes. It’s a diagnosis of exclusion, which means the lookalikes have to be ruled out until there’s nothing else left (but as you’re a nurse, you probably know that…)

Certainly, until the results of the MRI, the field is still wide open as to what it might be. I do not think MND is very likely, as although I do not know in detail what the differences are, I don’t think the distinction is hard for a qualified neuro. I don’t think he would be suggesting MS if you had symptoms indicative of MND. I don’t think MND causes pain or altered sensations. I’m not sure it causes visual problems either.

Tina

x

Sorry, spelling is all shot - I do know the difference between “your” and “you’re”, but fingers don’t tonight. Sorry for any other typos. I think I’d better go to bed, before I start spelling everything phonetically, which is the next stage, if I don’t rest…

T.

x

Hi Tina thank you for your reply i have confided in my hubby but that’s all and he is fab but I am very much when talking to him " I am fine " in the family I am the person who provides support but finds it very hard to ask for support hence the reason I am so grateful for forums like this it is easier to as for help and support from others who have a common link I have decided that following the result of my MRI I will speak to my parents my hubby thinks I am a bit In denial don’t speak about it and it isn’t real I read this page and it scares me as well as reassures me others are In Similar situations I appreciate you taking the time to reply time will tell every day is like a month x

Ps don’t apologise for typos I don’t think I have punctuated my post I see to have lost the ability to use full stops and capitals x