Urgent Neurology Appoitment

New diagnosis and before diagnosis
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Hi Everyone

I am new to the boards and have found so much helpful advice looking through the posts over the weekend. I have currently been referred to neurology urgently after a GP appointment last monday and have my appointment through for Wednesday.

A little bit of background, I was seen by neurology about 12 years ago after what was thought to be Optic N, I underwent 2 mri’s, an evoked potential and a lumber puncture then was treated with IV steroids but never given a diagnosis of MS (though it was spoke about as being a potential) that is where things become clouded, I can’t quite remember what was said and don’t have any of the letters… Anyway, I put it out of my head, learned to live with not having full vision in my eye, moved countries and didn’t bother telling my GP about my history and got on with things *hangs head at being the bad patient

Over the years there have been the odd thing that has been odd which I always had another reason what it could be, but around 18months ago I had severe numbness to the left hand, couldn’t type at all with that hand for around 3 weeks, it eventually subsided a little to leave some numbness but I was able to function and I did nothing about it as i was in the middle of IVF and didn’t want this to cloud anything *again hangs head at bad patient There have been other things, like random shooting numbness down my left leg lasting around 48hrs or so, tinnitus and overactive bladder syndrome all of which I explained away with one reason or another,

Things changed around 3 weeks ago, the numbness in my leg returned but this time it didn’t go away, getting rapidly worse, up to the point that I felt I couldn’t walk, my legs didn’t feel like they were mine, they where tingling, felt so heavy, my foot was dragging behind me and I was losing my balance. Over the course of that week the numbness moved up the full left had side of me and my hand went back to not being able to type. I have had blurred vision, a stabbing pain in my left hand side which feels like someone is stabbing me with a pin and I’ve been feeling like someone is tying something really tight around my side…oh and don’t get me started on the exhaustion!

I went to the GP who ran a load of bloods, and ruled out Vit B12 & D deficiency and did disclose my history, the first GP felt quite confident it would be Vit B12 but when I went back for the results it wasn’t and I got referred urgently to neuro. The GP I seen last monday seemed fairly confident that he was referring me for suspected RRMS. I have requested my notes from the previous neurologist but haven’t received them yet and will feel stupid going in with out being able to totally recall what he said to me. I do remember him saying that something showed on my lumbar puncture but what he actually said is anyones guess!

I’m not even really sure what I am hoping from posting all this apart from being able to know that there will be people who will understand at least in part how I am feeling. I know that no one can confirm if it is MS or not and I’m probably in for a long journey ahead of me whilst we try to figure out what they heck is going on.

I only wish I hadn’t been so stupid and ignored it all before now…

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Please do not waste energy wishing that a much younger you had been a different person with a different perspective on the priorities and concerns that faced you then. Muddling through, trying to balance off conflicting demands, hopes and dreams while hoping for the best is what we all do most of the time; whether things work out for the best is more a matter of luck than judgement, or so it seems to me. So please do not worry about not having beaten a path to your neurologist’s door until recently.

I hope that your consultation sets you on the road to finding out what ails. Neurological things can take a while to get to the bottom of, as you say, although they don’t always. If you do manage to find copies of earlier consultations and lab reports, that would probably be a great help - in my experience, doctors do particularly like to see evidence noted down in the past by other doctors.

Good luck with it all.

Alison

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Thank you for responding Alison. You are so right about wasting my energy on what I should have done all those years ago. I can’t change that and thankfully I’m doing something about it now.

I have requested copies of everything from neurologist all those years ago but I still haven’t got them. I’ll just have to go in with the basics of what I remember and hope for the best tomorrow. I’m sure I can then send them onto him to look at if say he’s sending me for further tests or anything…

Tonight is about making a concise symptoms timeline so I can keep on track tomorrow. Getting nervous now.

Claire

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hi claire

don’t be nervous about your appointment.

the neuro is nothing to be scared of.

good luck

carole x

ps i hope the neuro isn’t scary (there’s always an off chance or is it me being over imaginative)

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ps after 12 years if you are diagnosed with ms, it seems to have been fairly manageable so hopefully will continue to be so.

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Thanks Carole, I am hoping he isn’t too scary too! I just feel a little foolish as my whole recall of the outcome of my last neuro is so vague and I feel he will look at me like I’m daft for not remembering details. I think I was so scared by it all I just put it out of my head and refused to think about it again.

I am though as you say holding onto the hope that if this does turn out to be MS that having the 12 year gap without anything that I would say has had major impact on my life (apart from the over active bladder) I am doing okay and it has been manageable!

I will update you after my appointment. x

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Well neuro appointment went well, thankfully he wasn’t scary! Listened to everything I said, did a full neuro exam and lots of issues still evident to him despite me thankfully feeling much better. On taking my history he said that most likely I was diagnosed with CIS 12 years ago and on going through my timeline he said that he can pinpoint at least 4 episodes and basically said I was looking at rrms and an Mri will just be to ensure we have the correct things completed for full diagnosis.

I suppose I was prepared for this and will need to face it head on. I’m not going to take it lying down!

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well done claire

you were prepared for an ms diagnosis so the shock won’t be as bad for you.

hopefully you wil be offered a DMD, is there a particular one you’d like to try?

carole x

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Well, that sounds like a very sensible and no-nonsense consultation. It is a very beautiful day here, and your post takes my mind back to another beautiful autumn day many years ago when I received some rather similar news. There were a lot of very complicated mixed feelings swirling around, that I do remember, and I think that a certain amount of wine was involved.

Thank you for letting us know how you got on.

Alison