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Shock diagnosis (this time with paragraph breaks!)

Posting again as read that some people could do paragraph breaks on phone but not on computer! I have recently been diagnosed with RRMS. It was a speedy diagnosis (extraordinarily speedy judging by a lot of other people’s experiences that I’ve seen on here and other sites) - I went to see my GP just over 4 weeks ago because I had tingling and numbness in my face, tongue and throat and some dizziness. I was convinced that I had an ear infection but the GP couldn’t see any problem with my ears, wasn’t happy with the altered sensations as she described them and put through an urgent referral to see a neurologist. Over the next couple of days the dizziness/loss of balance worsened while the facial symptoms worsened. By the time I saw the neurologist 2 weeks later, some new symptoms had joined such as buzzing in my legs, neck spasms and jerking of the head and some problem thinking of the right word or what I was supposed to be doing. Based on examination and symptoms neuro felt that I had inflammation on brain and possibly spinal cord (weakness and extensor plantar reflex (Babinski?) of left leg, past pointing with left arm and inflammation behind right eye). He said this could be cause by infection but it was more likely to be MS. So I had MRI head and c-spine a week later and neuro rang me 3 days after to confirm diagnosis. I’ve had my copy of his letter to the GP which says the MRI showed ‘handful of small white matter plaques and a couple of brainstem/cerbellar plaques’ and that ‘they report several plaques in the cervical and thoracic cord, although I found these hard to identify’. I had dizziness and numbness/tingling in both arms and hands in February so he thinks that was also a relapse and had referred me to the MS clinic to consider treatment. I also had an ‘episode’ about 5 years ago, which was at the time diagnosed as shingles with no rash, that he thinks might have been the first major attack as I have had hermitte’s symptoms since then. So, all in all it’s been something of a shock and as you can imagine my head is full of questions! Can I ask if anyone knows whether the number of lesions is related to the length of time I might have had MS? I’m driving myself made now thinking of everything that I’ve ever had wrong with me and thinking ‘I wonder if…’. Also, if the neuro found the reported plaques on the spine hard to identify does that mean they might have been something else? And finally, does anyone know how long it takes to get referred to the MS clinic following a general neurologist’s diagnosis? Thanks for reading! Sorry it’s so long!

I’m glad you got such a speedy diagnosis, at least you have something to hang those frightening symptoms on! :o

I’m not diagnosed myself so can’t comment. I’m sure somebody knowledgeable will be along soon to help out :slight_smile:

Lynda xx

Wow! That sure was quick and not the norm at all!

I think that as you now know what is wrong, there is little point in going backwards in your mind, trying to pin all your problems on MS. Little can be done to change what has happened in the past. But I guess it is human nature to start thinking on those lines.

It is difficult to say how long it will be before you get to see someone in an MS clinic. But just going by the speed of what`s already happended, you may not wait too long.

All this is bound to throw you and make you feel inundated with questions and what ifs.

If you`d like to read up on different aspects of MS, this website had a wealth of literature available free.

luv Pollx

Thanks Poll - I’ve been reading stuff here and everywhere else. You are right about there being little point thinking back. If I’m honest I’m probably doing that to avoid thinking forward. Although from what I’ve read there’s little point thinking about what might happen either! I’m just not used to feeling out of control. It’s always been my way to need to find answers and be able to explain things. I’m guessing that’s going to have to change x

Your right that you have had an unusually speedy diagnostic process, so please allow yourself time to get your head round things. I found it hard to adjust to being ‘out’ of control, think you learn thought that whilst you can’t control the future you can control the here and now, so try and live in the moment and not worry about the future or past. Good luck x

Hello and welcome :slight_smile:

Looking back is something I think everyone who gets diagnosed with RRMS does - and it’s amazing the number of things it explains for some people! However, the others are absolutely right about not getting hung up about it: there’s nothing to be done now after all.

Thinking forward is a different matter and not one that there is a hard and fast rule about: we all cope with it differently. For me, I accept that things could get worse and have made contingency plans, just in case, but I don’t dwell on it because there is absolutely no way of knowing for sure and there is no point in worrying over things that might never happen - it just detracts from getting on and enjoying life! Tbh though, I think a lot of us live in a form of denial: we know that a nasty relapse might be just around the corner, but we don’t really believe it. Of course, that makes relapses one heck of a blow, but knowing that we’ve recovered before and adjusted to whatever changes they’ve caused means that dealing with them gets easier. Basically we bounce back quicker with practice :-/

As far as being in control goes, AnnieB said something very wise on here fairly recently which may be helpful (I’m paraphrasing): life is uncertain, other people just don’t know it yet. And from one (ex-)control freak to another: it gets easier!

As far as lesion numbers goes, the number of lesions increases over time in each individual, but the number itself doesn’t definitely reflect how long someone has had MS, e.g. I have seen MRI scans with masses of lesions in someone newly diagnosed and I have seen MRI scans with hardly any lesions in someone with long-standing MS. The number of lesions also isn’t a very good reflection of how bad someone’s MS is; the key thing about how much damage lesions cause is actually where they are, e.g. a tiny lesion in a really important place with no backup systems will cause much more severe symptoms than a big lesion somewhere where the brain finds it relatively easy to work around.

As far as the neuro not being able to identify your spinal lesions goes, all it will mean is that they were hard to see which isn’t unusual with spinal lesions (MRI isn’t very good at picking up spinal lesions). I would normally take a radiologist’s opinion about MRI over a neuro’s any day, so it’s probably fairly safe to assume that they are there, especially as some of your symptoms suggest spinal lesions too.

My apologies for the number of “as far as… goes” - it’s late and my brain is ready to shut down for the night!

Nearly forgot: referral times vary massively. If you are able to take an appointment at very short notice, then it might be worth calling the hospital and telling them that you’ll take a cancellation.

Karen x

Thanks Karen. I think I need to try to chill out a bit until I have been to the MS clinic. I do have a track record of over thinking things! I would have been happier if I had a fuller report from the MRI because then I could relate it to your wonderful sticky explanation but the statements in the letter to my GP are rather vague and don’t state what areas of the brain the lesions were found (although the neurologist did tell me on the phone that they were in the areas they would expect them to be for MS).

I am trying not to be too hard on myself about how I’m dealing with all this but it is hard. Mostly because it is important to me that other people see me as being very capable and self-reliant and obviously friends and family members are not happy to hear the ‘everything’s fine’ line because they want to help and support me whereas I just want to hide in a cupboard and pretend it isn’t happening!

I think I need to get a hobby and stop obssessing!!