Probable/Possible Ms

Hi everyone

Im new on here-

Im a quite confused to be honest and not sure how to write this but I will give it ago- and give a quick overview from the beginning

Ive had lots of different signs and symptoms since the age of 11 (I’m 28 now) such as passing out- pins and needles Fatique - leg/arm pain-shakes difficulty walking, skin itches (not all the time though)- forgetfulness -One minute I’m happy (normal) next Im either depressed or crying, as soon as I feel that I need the loo I have to go as otherwise I think my bladder will burst but when I get there, not much comes out.

difficulty understanding conversations (not always though) depends on situation. And concentration levels are quite low

I get stiffness around the neck- and what I call a sticky right shoulder (I just can’t put it anywhere as its feels so uncomfortable)

My eyes have come back inline- however sometimes they do hurt a little behind the eye and somedays they feel so itchy (a bit like sandpaper)

I was amitted to A&E Jan 2012 for suspected stroke- as both my eyes were affected (lets say I could look both ways at the same time) left side was numb- and I couldnt walk unaided. Had Mri scan which showed inflamation of the brain

2nd MRI shows 3 lesions and a Spinal tab has come back positive and Nero has advised its showing signs of MS however Im in the probable/possible stages however I have to have another MRI scan.

My Gp reckons that my chances of having MS is at 80 to 90% however the hospital only reckons 55%

Im so confused

maybe someone may be able to shed some light for me-

Thank you in advance

Hi Jojo, welcome to the site…

No wonder you’re confused. Yes the whole MS diagnosis thing can be very confusing!!! Takes the patience of a saint.

Well your symptoms certainly sound like MS… and as you are showing lesions on your MRI and have a positive LP I think you are most probably on the way to an MS diagnosis.

I think the neuro wants to do another MRI to see if the lesions are separated in space and time. This is what they need for the MS diagnosis (dx). It means that the lesions must appear in different parts of the brain (space) and to have appeared at different times. So he wants to do another MRI to compare to your other one to see if there is a difference in lesions between them.

LP is used to help towards a dx of MS and most people with MS will show ‘o’ (sorry I can never think of the right word) bands in their LP. But also people with other conditions and not MS can show the same result… so although it’s useful as part of the evidence of MS, it is not 100% reliable.

There is no single test to dx MS. They put all the evidence together and try to dx with that. Your symptoms are part of that evidence.

Hope this makes things a bit clearer and not even more confusing!

MS (as you now realise!) can be a bug*er to dx… but you are having all the right tests and it does sound that it is leaning in that direction. There are other conditions that can mimic MS so there is a small chance that you don’t have MS… so it is a case of playing the waiting game I’m afraid.

Hope you get a definite dx soon. In meantime, live by the ‘one day at a time’ mantra.

Pat x

Hello, and welcome

Just to add a wee bit to Pat’s reply - the percentages really don’t matter, because even if someone is told 99%, they still might be lucky and end up being in the 1% who never get another attack.

The general % for getting MS after having one attack is 50%. Some things make the number go higher. For example, a small number of lesions on the MRI increases it a bit, but a lot of lesions increases it more. Other factors are a positive LP (increases the odds), the location of the lesions (for some reason people with lesions in particular places are more likely to have another attack) as well as how well someone recovers (a good recovery reduces the odds).

So it’s ridiculously complicated! And honestly not worth getting hung up about.

Stick with it might happen, but it might not!

And just so you know, if it does happen, it really is not the end of the world. Yes, it sucks at times, but the vast majority of us still manage to do all the important things in life as well as have fun doing them! Life can still be good.

Karen x

Hi Karen & Pat

thank you ever so much for your comments they mean a lot-

yes I’ve decided that I must think positive from now on and tell myself everything is ok so that I can lead a normal life- whilst I wait for a proper dx-

It really does help being signed up to this site it makes everything seem so much better and knowing that Im not on my own

huge thanks and big hugs to both

JoJo x

Dear JoJo - I think the replies you have been given are very useful. I would say that Oligoclonal bands in your CSF make it more likely that you will have an MS diagnosis. However it is not certain and like Rizzo said even with a diagnosis you cannot predict how you will be - there is nothing to say you won’t have one isolated incident then nothing.

I really hope you get some answers soon.

If this is any help - In Dec last year I went to see my neurologist and I had resigned myself to the fact that he was going to tell me it was too early for a Dx (my CSF was clear and my MRI had multiple lesions but no change in 2yrs). I just told myself - sod it, I know something isn’t right and eventually one day I will get my answers but for now I will just take each day as it comes. I will treat the symptoms as they arise and not fret about getting my diagnosis.

As it turned out I did get my Dx which I was completely shocked about. However it didn’t actually help me as much as I thought it would. I have started to tell family and friends but they just don’t know what to say and so now I don’t tend to tell people unless I need too ( I thought hubby might be more sympathetic but he is in denial too so doesn’t like to talk about it). I suppose the one thing I feel it mainly helped was that it made realise I wasn’t going mad! Good Luck x

Sorry if that was a bit waffly I should be in bed!