MRI results.....ho hum.

New diagnosis and before diagnosis
1

I saw the neuro today and he told me my MRI was clear BUT he’s still of the opinion that I’m likely to have MS. I find this a tad surprising given how reluctant many neuros seem to be to diagnose this condition.

Anyway, I’m on his NHS list now (MRI and first 2 appointments were private due to excessive waiting list here in darkest West Wales, but I can’t afford it any longer) and he’s requested a lumbar puncture, further MRI (a bit lower down the spine) and evoked potentials tests.

I was remarkably controlled for most of the appointment, but then blubbed rather pitifully in the car on the way home. The sight of some poor miserable looking bloke in a wheelchair in KFC set me off and I assailed my long suffering other half with wimpers of ‘If I end up like that I really don’t think I could stand it’ - pathetic woman that I am.

Although I still don’t have a firm diagnosis I really feel that I need to steel myself and start telling my nearest and dearest, and my team leader at work what is going on with me. I don’t see my Mum and Dad very often as they each live a fair distance away and how the hell do you casually drop ‘Oh, by the way, I may have MS’ into a phone conversation? I find it incredibly difficult to talk about without bursting into tears, which is blimmin’ embarrassing all round!

I seem to be going through a spell of veering wildly between being terribly upbeat and horribly pessimistic.

Here is where I would like to have a darn good swear, but I don’t think this forum allows it! Sometimes a stream of profanities can really ease the tension.

Going to enjoy the rest of my bottle of Rioja now.

Tina x

2

Sorry, but i also find his comments odd. Can i ask how many gp appts and blood test prior to his comments? Also how long with symptoms? If you have had these then forgive me. Only i know from personal experience how long a dx takes. 27months after onset of symptoms i had mri whixh show atleast 8 lesions and i was dx. I was then sent to ms specialist and she would not confirm ms. I had another mri in feb this year, which showed more changes was i then confirmed dx. Suggesting an illness is a little strange i must say

3

Hi again Tina,

sorry to hear you didn’t get a straight-forward answer today but it can be a long process trying to diagnose MS. The good point you can take from today are that you have a neuro who seems keen to get things sorted, might mean another barrage of tests but hopefully the will yeild some answers for you.

You are not pathetic for feeling confused/scared/angry about the prospect of a diagnosis. Try to remember though that the majority of people with MS take a long time to get to severely disabled state, if ever. I do understand the extremes of emotion you are feeling. In my diagnosis before MS was on the cards it was thought i had a brain tumor, i like you spent one min ready to fight and the next whimpering in the corner, It will pass. The best advice i have been given thus far is to try not to worry about the future too much - things will work themselves out in the end whether you worry or not!

I personally don’t think you need to tell every one about all that’s happening unless you feel it’s imperative. Maybe talking it all through with your hubby and a few close friends might help relieve some pressure for you?Don’t feel embarressed about getting emotional it’s only natural. If you feel it’s necessary then do tell your team leader at work what’s happening - no need to give them all the details, just the basics. I find swearing or screaming or both into a pillow can be quite helpfull (means my kids are less likely to hear me!!)

Try and stay positive and if you need a good rant there is always this forum! Can’t believe you even have any rioja left…but enjoy it and try to relax, things are going to be ok.

Laura xx

4

Thanks for your comments. Feeling a bit more collected this morning, but I’ve decided I can’t handle work today and I’ll spend the day putting my thoughts in order before I face the delights of my job again tomorrow (I work in a government dept call centre - can be quite stressful at the best of times!) I have the feeling today that if some caller has a go at me I might be too tempted to tell 'em to go forth and multiply…

Sheriff…having thought about what the neuro has said, I’ve concluded that I’m quite grateful to him for maybe giving it to me straight rather than pussyfooting around and giving me false hope that everything’s going to be OK. He said that in a small number of cases MRIs don’t show anything obvious. Given the age at which I started to have symptoms (I’m 48 now, started about 2 years ago) and the way they’ve got worse, it’s possible I could have the progressive type rather than relapsing. So maybe he is being a bit pessimistic, but at least I’m prepared for the worst and if I get better that’ll be a bonus!

He’s prescribed some tablets that may help with the stiffness in my legs, so hear’s hoping I may see a bit of improvement.

Laura - Thanks so much for your wise words. I polished off the wine last night which helped enormously! I AM a bit of a booze lightweight and half a bottle is pretty much my limit. Haven’t mentioned that I also have diabetes which explains my moderation (on insulin, multiple injections each day) - my cup truly runneth over, eh? But not with too much wine!

Gotta ring work’s attendance line now…deep breath

Tina x

5

Hi there Tina. I really find it odd that he mentioned MS on a clear scan. I have one lesion on the cervical spinal cord and on that basis have not got a dx. My LP was clear. My only symptom is spasticity in right leg which is getting worse and am on baclofen. I am 48 too. What are your symtoms? I have no numnbess, sensory issues or vision problems. I sometimes think that PPMS is labelled on people if they can find nothing else. Poll on this forum was mis-diagnosed with PPMS for years (maybe 8) and her MRI was always clear. Is your neuro an MS specialist ?

Moyna x

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Hi Moyna. I’m not sure if the neuro is an MS specialist. Choice here in West Wales is a bit limited! My symptoms are very stiff legs that won’t do what I want them to, dodgy balance, left and to a lesser extent right hand reduction in dexterity. I get cramps and pins ‘n’ needles in my hands and lower legs. No particlar fatigue problems and eyes are fine. The first things I noticed, maybe about 2 years ago, was losing the ability to run or jump, and tripping a lot where I just don’t pick up my feet properly when I walk. Symptoms have been on a marked increase in the last 6 months. I can still manage stairs but very slowly and I use a walking stick if I go out and about on my own without my husband to hang onto!

I think it can be very easy to be critical of neurologists when they don’t come up with definitive answers, but my take on it is that the brain and its workings are incredibly complex and there’s still a vast amount that medical science doesn’t know. The doc I saw seems like a genuine guy who really seemed to care, and I want to believe he’s doing his best.

Maybe I’m too trusting but that’s me!

Tina x

7

aw no that sucks, my father-in-law has diabetes and has a penchant for cider! Still it’s better to have half a bottle than none at all!?!

For what it’s worth i think your neuro sounds like he is on the ball, i hope for your sake it is something other than MS, but like you said at least he is being upfront about things and seems to be looking for an answer. I know from personal erxperience that this is not always how neuros work. I was under a locum neuro for some time that told me there was no antatomical possibility of my symptoms being neurological!! So at least he is on your side!

I hope you start to feel better soon

Laura x

8

I could have sworn that I’d already replied to your post Tina, but apparently not!

I like the sound of your neuro and, if I were you, I would have faith in him too.

Ultimately, MS is diagnosed clinically. That means that, while MRI, LP, VEP, etc results give important information, they are not conclusive and it is even possible to have all negative results and still be diagnosed with MS quite correctly. The only time it would be inappropriate would be when the patient’s clinical signs, history and symptoms are not consistent with MS (because they are actually the most important pieces of the puzzle) and when other possibilities have not be ruled out.

It’s great to hear that your neuro is taking your case very seriously and is ordering more tests. Hopefully it won’t be long before you get some proper answers.

In the meantime, please do not beat yourself up about blubbing, no matter where, when or how loudly! It’s a perfectly normal reaction and it’s good to let it out.

I have to say though that the bloke in the wheelchair may have been looking miserable because his football team lost or because he had an argument with his drop dead gorgeous girlfriend or because he’s a miserable git anyway or because he’d just lost a game of wheelchair basketball or because he’d wanted to go to McDonald’s, not KFC or because… You get the drift I’m sure :slight_smile:

I know the possibility of wheelchairs is a terrible fear in the early years. The truth is that as time goes on, fears take on a whole new perspective. Where once there was fear, for the small proportion of us who use a chair, we now see freedom, independence, shopping(!), cheap theatre tickets(!), but most of all, no more struggling without one. But remember it’s only a very small proportion of us who need a chair full-time so chances are that you never will either.

A counsellor once made me face my fears and then helped me to realise that, not only may they never happen, there are loads of things, people, organisations, meds, therapies, etc to help me and that, actually, I would be OK; I would cope. After all, why on earth wouldn’t I? Loads of people do!

Re your mum & dad, do they know you’ve been having symptoms / seeing a neuro? If they do, then I’d go with “they’re not sure what’s causing it, but MS has been mentioned as a possibility” or something like that, followed by a question about how the cat/AuntyX/old Mrs Y is. If they don’t, then I’d go with, “I don’t know if I’d told you that I’d been having some problems with my legs? Well, I’ve seen a consultant and they’re going to run some tests.” followed by the change the topic question and then a phone call after you’ve had the new tests to give them more info. If neither of these options will work, maybe send them a letter? I know it’s hard though. I once rang my mum from the hotel car park and sobbed for about half an hour solid. The poor woman couldn’t get a coherent word out of me! God knows what was running through her mind! She already knew I was seeing the consultant though, so at least I didn’t have to explain that part. Whatever you do, you’ll muddle through somehow or other and it’ll be OK.

Karen x

9

Oh, Karen, you have such a great ability to say just the right thing! Your words have made me cry but in a GOOD way. I’m blubbing but smiling at the same time.

My Mum now knows what’s going on, and she was calmer than I expected, but my Dad was out when I phoned last night. I’ve taken a day off sick from work today to get my head a bit sraighter, and had a somewhat tearful conversation with my Ops Manager this morning. I just want to be open about what’s happening to me, so he’s going to speak to my team leader as well. I think this is for the best as I’ve found it really difficult at work lately with people asking me what’s wrong when they see me hobbling along - since moving here to Wales, I’ve found that Welsh people are naturally curious, or just plain nosey! I work with some truely lovely people though, and I know they’re going to look out for me.

Spent some quality time out in the sunshine with my ancient pony earlier (she’s nearly as wobbly as I am!) and everything feels brighter.

Cheers

Tina x

10

Keep strong Telstar.

Your 9.30am post almost exactly describes my symptoms (I’m too shy to say what else I suffer with, just let you guess!). It’s so nice to feel I’m not alone.

BTW I had a clear LP but MRIs of cervical spine and brain showed multiple lesions.

11

I have simular symptoms, but more on the left side of my body along with blurred vision and right hearing loss. My MRI’s have all been clear like you but my Neuro confirmed this does not mean I have not got MS and has ordered evoked tests and LP. He did take me by surprise with his comments as he had written to my doctor confirming it was absolutely not MS a month ago. Its all really confusing but I will carry on…

x