Just been told I may have ms : (

Hi just been told by neurologist that he thinks I have ms as showing all the signs. I’m so scared he is sending me for an MRI scan and says the whole process will take up to 8 weeks, I’m covered by BUPA but they won’t help me because it’s already gone through nhs, I’m only 26 and I’m at uni and this whole ordeal is really scaring me, has anyone got any advice on what I can do in the mean time to help with my sore legs? I’m considering getting the Nuffield private hospital to give me an MRI scan it’ll take 3 days but it’s £500

Oh sorry I meant to ask is smoking bad for ms! Thanks

Sorry I don’t have much advice as I am only just going through diagnosis myself but I think it usually takes more than 8 weeks. Some people on here have been waiting months and still no definite answer either way.

I have read though, that smoking is NOT good for MS, neither is stress or overdoing things physically.

Hi Carlos and welcome

There are lots of conditions that can have similar symptoms to ms which will need to be ruled out, so I think it’s a little naughty of your neuro to say anything at such an early stage of the diagnostic process - all he’s succeeded in doing is to scare you.

Eight weeks to get a firm diagnosis is probably a little ambitious too - for most people the whole process can take months or even longer. For me it was 6 months from start to finish, for others it can be longer or shorter - there’s really no telling. But it can be a long haul I’m afraid.

In the meantime, rest before you get tired - try not to overdo things - listen to your body and look after you. Smoking isn’t good for anyone so maybe now is the time to consider quitting for good. Try not to google too much either - as tempting as it is - if you do want info on ms then it’s best to stick to the official sites like this one and the ms trust.

You’ve already got the idea in your mind that it may be ms, but equally it may not be,so it’s best to keep an open mind about things. Wait and see if the mri shows anything and take things from there.

So for now - as difficult as it is - carry on with life as you’d planned and enjoy yourself. If it does turn out to be ms then it doesn’t necessarily mean that you won’t be able to achieve your dreams. MS is variable and very much a personal illness - it’s different for everyone.

When you next see your neuro mention to him about your sore legs and any other bothersome symptoms that you may have - make a brief list of your symptoms starting with the worst ones.

Good luck Carlos and take one step at a time.

Debbie xx

Hi Carlos, and welcome

I’m afraid smoking is very bad for MS, but with the stress of what you’re going through it may not be the easiest time to be trying to quit! Maybe wait until you feel you could cope better?

Getting a private MRI is definitely one way of trying to speed things up, but going private does not necessarily equate to good quality and some neuros are reluctant to accept scans done anywhere other than the place they normally use. So, if you want to go ahead, please first check that your neuro will accept them and then check what the private hospital will actually provide for that £500. You need an absolute miniumum of a 1.5T scanner, an MS protocol, and ideally 3mm slices. To be fair, it’s highly unusual to get 3mm slices on the NHS, so you would be fine getting 4 or even 5mm slices if you just want equivalent to the NHS, but sooner.

As far as help with your legs goes, it rather depends on what’s causing the pain. If it’s muscular then massage, heat and gentle stretching can help if your GP won’t prescribe muscle relaxants for you until you’ve been diagnosed. If it’s neuropathic (caused by nerve damage rather than a physical cause), then you can try ice or heat to confuse the faulty signals, distraction (video games work quite well) or see if your GP will prescribe you some neuropathic painkillers, e.g. amitriptyline. (It can be difficult to get meds when undiagnosed as GPs don’t want to make things worse, but it’s worth a try.)

Try and hang in there through the next few months - hopefully all will go smoothly and you’ll get some answers soon. If it does turn out to be MS, then please take it from this old hand - there are far worse things to be diagnosed with! Life with MS can still be really good.

Karen x

I saw Neuro yesterday and I asked outright if it was MS, my sister and friend have it, so I know quiet alot about how different it can be in people. I too was told approx 8 weeks, 6 week wait for MRI and then 2 weeks for results, might do other tests after that. I live in West Yorkshire. Stress makes it worse and alcohol makes it worse for me, really felt like a drink the other week, but had a bad few days after. I find resting helps, I find it hard but make myself sit down for 1/2 an hour a few times a day if I can, hard as I have 2 children. Bout it can be done. Haven’t used the vac in 2 weeks, food and clothes more important!

hi hun, i was diagnosed 5 days ago. It took about 8 months for me which ive heard is relatively short.

Try not to worry too much, easier said than done. Rest as and when you can and be kind to yourself :slight_smile: x

Guy uv all been so helpful I really appreciate everyone’s responses because it can be hard to talk it through with loved ones as I don’t like putting stress on anyone and even though they want to help and talk about it I kind of try to ignore it, il try leg massages im booking a massage in at a health spa I hope it helps, do any of you guys feel that when you walk so far your legs feel really exhausted?

Thanks 4 all ur help Debbie I’m training to be a dr and I feel my dreams have been put on hold : (

Karen and everone else thank u, why does the process take so long to diagnose?

hiya…so sorry to hear of your poss dx. it’s not easy coping with symptoms that are it yet officially diagnosed…alas it seems to take some time because if the nature if ms but also the waiting times for MRI etc. the best avice I can giver you is to try and mange your symptoms for now ie fatigue and pain etc. see your gp and perhaps think about giving up smoking when you know what you are dealing with. there is never a right time but sounds pretty stressful at minute so be blinding yourself, eat well try the massage and find ways to focus on other things…as far as your training goes you may well bevabkevto continue this perhaps talk to uni about it and see what support you may or may not need. if you do have ms then at least you will be ale to make informed choices in Lots of areas of your life…and perusing your dreams and ambitions is still possible am sure. em

oops sorry about typos mybee sight is nt great plus iPad keyboard is doing its own ting lol :slight_smile: em

Hi and welcome, I will probably get told of by others but when I was first dx I asked about smoking he said there was no link at all to ms and because he could see I was so stressed told me not to worry about giving up. He was probably a smoker !! I hope you get some answers soon, stay positive if you can. Take care. Karen

Hi Carlos,

You’ve just had the rug pulled out from underneath your feet - quite unexpectedly - so it’s perfectly natural to feel the way you do. It can be an emotional rollercoaster and sometimes we can feel all sorts of emotions all at once. That’s challenge enough for anyone!

You mentioned that your loved ones want to talk about it but you try to ignore it because you don’t want to stress anyone up. Obviously it’s your choice, but it might help them understand things a bit better if you did. In fact it may be therapeutic for you all? Plus having that extra support helps. We’re all different though so you need to do what you feel is right for you.

Weirdly, I got some positives from being dx with ms! It opened my eyes up and changed my priorities for the better - so hold onto those dreams Carlos because things rarely turn out to be quite as bad as we perhaps think.

Debbie xx