could it still turn out not to be ms or am I deluding myself?

Hi , I was just wondering if after two mri’s that showed a couple of lesions in my brain and a patch on my neck and o bands in my CSF could I be ms free. had a dx of possible ms, and still have symptoms from hell. most of it is pins and needles and pain, burning and stiffness so its frustrating when Im struggling and every one thinks youre fine cos there’s nothing to see.But if/when these sensations go could it just go and me be fine again, can you have those results and it be nothing? Been told that i have to wait for another attack or changed mri to get firm dx, but this makes it feel enevitable and sometimes i feel like ok just tell me it is ms so i can get on with it but at the same time I want my old life back.

on a lighter note, when my sister told her lithuanian boyfriend that i had pins and needles, his classic reply was,‘It is eastern medicine, called accupuncture , she must remove the pins’ and he was being serious.

lynn

LOL re the boyfriend :slight_smile:

If your symptoms go and you get back to normal, you’ll still have possible MS; they won’t take the diagnosis away. There is a chance that you will never get MS though. Some people don’t ever have another attack. Tbh, it’s unusual when they already have multiple lesions in their brain & spine, but it does happen. That’s why they have different levels of diagnosis.

So you never know!

Karen x

Hi Lynn,

It is possible to have one MS-like “attack” (medically referred to as Clinically Isolated Syndrome - CIS), which could result in these findings. But then never to have another one.

A key feature of MS is that it’s ongoing over time. An episode that resembles MS, but isn’t repeated, won’t be diagnosed as MS.

So whilst your test results certainly aren’t “nothing”, it’s not inevitable that you will go on to develop full-blown MS. Not everyone in your situation does.

I know this sounds terribly vague. But it really is a case of only time will tell. You could have another attack quite soon, or not for a long time (years), or never in your life at all.

Obviously, fingers crossed it’s the latter, but it’s a good idea to remain vigilant for signs you could be having another attack. If you experience new symptoms, or a resurgence of old symptoms you haven’t had for a while, be sure and report it to your GP or neuro. It might be important evidence.

People with the most common form of MS, relapsing remitting, do indeed have periods of partial or even complete recovery in between “attacks” (relapses), so yes, it’s certainly possible for symptoms to go away, and to feel fine (or nearly fine) again.

Tina

x

Hi Lynn

Unfortunately up to a point it is a bit of a waiting game I’m afraid. As Tina has already said, time will tell. I know that’s not what you want to hear - there’s nothing worse than the ‘not knowing’ - but everyone here knows how it makes you feel even if others don’t. There will always be those that think there’s nothing wrong because they can’t see it with their eyes so try not to let that bother you too much.

It’s very easy to say of course, but for now try to get on with life as best as possible and see what turns up. Obviously you may need to adjust & tweak the way you do things etc and you don’t need a dx to get meds to help with some of your symptoms so it may be worth asking (if you haven’t already).

Hopefully you won’t have anymore episodes but keep a brief note of any symptoms and obviously contact your neuro if things get worse.

take care & good luck

Debbie xx