Hi Over the last week I have had severe pins and needles on the right side of my body which has got progressively worse throughout the week. I went to my GP who has referred me to a neurologist. Yesterday I woke up and the sensation had started to happen in my right side aswell, so I went to a&e. the doc told me that I needed a scan but as it was Saturday and it wouldn’t change anything they couldn’t do it then but it was likely to be MS… They said they will email my GP and I’ve got to ring tomorrow to try and speed things up. I’m starting to not be able to hold things now and I’m worried how long I’m going to be wondering what’s going on, as I have read that the process to diagnosis can be a long one. Any advice would be greatly received. Imo x
Hi Imo, welcome to the site
Very scary for you and all so sudden.
I’m a bit surprised that the doc said it’s likely to be MS at this stage. Normally they would expect symptoms over a longer period before thinking it might be MS… however he’s the doctor and I’m not.
There are other conditions that can cause symptoms similar to MS so it is really down to the outcome of the scan. They will give you and MRI (scan… and not painful or anything) and will be looking for lesions (scars) on your brain or spine. They will be particularly looking for lesions separated in space and time. That means lesions that are in different areas (space) and that have appeared at different times (time).
For this reason you might not get an immediate diagnosis from the first MRI. They might want to wait and do another MRI in a few months time to see if other lesions are showing. However I stress again that I am not a doctor so things may go differently than that.
If there are lesions they still might not be able to confirm MS and they might then do a lumbar puncture… they will take some fluid from the base of your spine and look to see if your immune system has been active in your central nervous system. They might need to do that… but might not.
Sometimes people have what’s called clinically isolated syndrome… that means they have had one episode of MS-like symptoms but will not necessarily have another.
So it’s really a ‘wait and see’ process… the MRI being the first and most important step. Frustrating for you but there is no shortcut to diagnosis. Sometimes diagnosis can be quick, sometimes it’s not so easy. There isn’t one single test but they put together lots of pieces of info… a bit like a puzzle… to see if they can diagnose. Some people get diagnosed very quickly, for other people it can take a long time. Just like MS itself, it’s different for everyone.
IF it turns out that you do have MS then I can tell you that it is NOT the end of the world. The majority of people with MS continue working, have relationships, have babies, drive, go on holidays… etc etc etc. Yes it means making some adjustments along the way… but many many people make those adjustments and enjoy a full and happy life.
Hope you get your appointment soon… let us know what happens. You are in a good place on here… everyone understands.
Take care and good luck,
Pat x
Hi there,
I think it’s a bit premature and irresponsible of them to have told you it’s “likely” to be MS, before you’ve even had a scan, or any of the tests to rule it in or out.
MS is very hard to diagnose, and there are literally hundreds of things that can look a bit like it - ranging from other things that are also serious, to simple and easily treatable vitamin deficiencies. One episode, of a week’s duration, and no scan or anything yet is definitely not sufficient to conclude “MS”.
I’m certainly not trying to dismiss your symptoms, and unfortunately I can’t reassure you it’s NOT MS. But I just think it’s very early days, and so far there are still lots of other things it might be. Try to stay open-minded, and not leap to the worst possible conclusions about what’s going to be found. An A&E doctor is NOT qualified to diagnose MS, and even a specialist neurologist will usually only do so with caution, after stringent investigations to rule out everything else.
It’s hard, but I’m afraid the only thing now is patience. Bear in mind that, in clinical terms, (suspected) MS is not a life-threatening emergency, but a chronic condition, so will not have the highest NHS priority. It may seem odd that something potentially serious isn’t urgent, but it doesn’t usually require emergency intervention, so “normal” (non-urgent) waiting times are likely to apply.
You might be lucky and be seen sooner, and you shouldn’t interpret that as meaning your condition is “more serious”. It really does just depend on waiting lists at the time, and whether you might get a cancellation or something.
I hope you get some answers soon!
Tina
Hello and welcome 
I just wanted to agree with Pat and Tina that there is every chance that it is not MS. Pat has already mentioned clinicially isolated syndrome (CIS), 50% of which do not go on to get MS, but there is also something called ADEM which is a one off MS-like attack that never develops into MS. You’re right in that getting a name for your symptoms might take quite a while, but please hold onto the fact that the odds are actually in your favour of this being the only time something like this happens to you.
Unless something weird has happened to you before, the A&E doc has seriously jumped the gun - he should go and sign up for some revision courses!!!
A word of warning and hope: MS-like attacks tend to get worse before they get better.
Hang in there.
Karen x
Thank you for your comments, I appreciate it. And yes I appear to be getting worse! My gp has contacted the neurology dept three times now so I can’t fault them at all. I’ve just got to wait and see. The a&e doc said it was likely as my grandmother had MS although I didn’t think it was something that could run in the family!? I’m quickly losing the ability to grip things, even a fork, it’s quite scary feeling at the moment as usually a healthy 26year old!! Again thank you Imo x
There is a genetic component to MS so having a relation with MS slightly increases the chances of getting it, but it is not hereditary - there are plenty of people with MS who are the only members of their family to have it. That revision course is definitely needed for that doc!
The getting worse stage is really scary and the getting better stage is often mindblowingly slow and frustrating, but it does happen. Try and keep hold of the light at the end of the tunnel!
Kx