newly diagnosed and could do with some advice

So my saga starts in December 2012. I got numbness all down my left side, perfectly left side too. One side of my spine fine, other side tingly and all the way around to,my belly button. From my armpit down to my toes. GP said it was nothing and to just keep an eye on it. still struggling on the Friday so I went to the Local A&E. They couldn’t work out what was causing it… I’d googled symptoms (never a good idea lol) so doctor said he could rule out some things… Tested my responses and equal strength on both sides…yeah its definitely not MS. I wish hed told this to my body! I was advised to take it easy for a bit, it had already started to improve so it was all fine.

One year later again in December, the numbness came back only this time on both sides and in my arms too. Again neurological tests and equal responses. Some blood tests and a referral to a neurologist. While waiting the symptoms got better until I was on holiday in February and I had a little muscle weakness twice… I don’t even know if it can class as muscle weakness, more I thought my hand was doing what I wanted it to do and it was being a bit more clumsy. Got back from holiday and a week later finally had my neurologist appointmen, a visiting doctor in from another city for a weekend clinic. Again no muscle weakness or slow response, did I want them to investigate further? Honestly if symptoms hadn’t come back I probably would have said no. But instead I requested more tests, “oh well I suppose I could sent you for a scan, but it might not show anything” FINALLY 2 months later I had a head and neck mri. Couple of weeks later another appointment with a different visiting doctor. I went by myself and he wanted to send my for another scan, I had brain lesions and they wanted to investigate. And told me it was possibly MS. I honestly dont remember what else he suggested. Finally at the end of May on a Saturday (while battling a UTI) I went for my brain mri (yes I have a brain, my family and I were all amazed) then 3 days later I had an appointment with an actual Edinburgh consultant. I had to practically beg my fiancé to attend with me, he’d been working lots and was knackered and how much could they possibly know, I’d just had my scan. Luckily he came and sat with me as I was told “well we can look at the new mri in a minute and then talk about your diagnosis” and thats when I found out I have MS! A mild form with episodes and mine is not muscular its more sensory. The NHS has just approved some more medications, so I’m going back on the 17th July to decide what kind of medication I want to take. I’ve told more people than I can count and its just never ending. I was at the dentist yesterday and they asked had anything changed medically so I thought I best tell them incase they need to know, then 2 hrs later I’m at optician for my contact lense check and the same thing happens, again telling a random stranger incase they need to know…

Any advice or information, or pretty much just confirmation I’m not the only one feeling this would be greatly appreciated,

Thanks Lorna :slight_smile:

Hi and welcome.

You seem to be finally on the right path and will get treatment in the form of DMDs. Another piece o advice would be to take vitamin D.

Moyna xxx

(((Hugs))) Being diagnosed left me mentally reeling and I expected it - it sounds like you had no idea. Feeling like your life is out of control, like you don’t know which way is up or what to do first, is normal.

You have to tell DVLA if you drive and you haven’t already done so. The form is on their website.

There is plenty of information and advice elsewhere on this website, including various publications you can either download or ordered printed copies of. I found some of them very helpful when I was diagnosed, so have a look. There is also information on DMDs on the site and I am sure that other people will be happy to offer their advice - if you ask in Everyday Living you will get more response.

I have just been diagnosed with MS on April 1st (ironic) this year. I had not felt well for about 12 months with tingling in my arms and legs, a really bad episode of labrynthitis, palpitations and anxiety. I had a brain scan then a lumbar puncture. I was told mine is quite minor and am able to carry on with my job, 30 hrs per week. My problem is I have just gone down with a really nasty virus, sore throat and hacking cough. I wondered if viruses could be worsened with MS as it is all to do with your immune system. I am jsut doing the usual thing of staying in bed, paracetomol and fluids, but have had it since last Thursday and feel dreadful. Any suggestions. This is my first time on here. Best wishes to all fellow MS sufferers.

Ameliagrace, the simple answer to your question is I don’t know, but if you start a new thread in Everyday Living, you may get a better answer.

Welcome to the forum, sorry to hear you are ill, I hope you feel better soon.

Lorna123, I just wanted to let you know that you’re not alone. hugs I was not expecting my diagnosis (end of April 2014) either and it really has thrown me for a loop. I alternately felt okay about it and then wanted to rail against the world and all its injustices. I am slowly adapting now but it does take time. Remember to be gentle with yourself and take it easy. Good luck! x

Hi Lorna123,

Sorry to hear about that, sounds a bit like my diagnosis nightmare!

The best piece of advice that I could give is to listen to your body! Sometimes your body needs to rest to get itself back to normal & pushing yourself too hard can cause a relapse (I speak from experience there having pushed myself too hard and ended up nearly bed ridden with muscle weakness for 2 weeks - I could only move about to get to the bathroom and that was about it!). Listen to yourself and what your body is telling you and trust your instincts.

It is good if you can talk to your fiance about it and hopefully he understands what you are going through, it is always comforting to have someone to give you a hug at the end of a long day :slight_smile:

Agree with Mitzi - tell the DVLA and also any insurance companies (car, travel, health etc). Although premiums may go up with your current insurer (if you have one) it is always worth looking around for better deals. If you don’t tell them about your MS then it will make any claims null and void and you won’t be able to. Not all insurers cover people with MS so it may take some hunting around unfortunately :frowning:

You really aren’t alone in whatever you are feeling, there will be someone feeling the exact same thing as you!

Am always here and happy to talk :slight_smile:



Yep, I was diagnosed about 3 weeks ago now? I can’t remember exactly when lol. It’s weird but I felt better once diagnosed. I’m in the ’ I will fight against it’ frame of mind ATM. I do listen to my body, if I’m tired I rest, and not potter about a bit rest, I mean, sit on your bottom and do nothing rest. Otherwise I’m worn out and no good to anyone :slight_smile: it’s also weird saying ’ I have MS’ as for so long I’ve been saying ’ they think I might have MS’, so that’s took some getting used to. I’ve got things to sort out. I have to get my bladder issue sorted, sometimes I just can’t go! But I don’t want tests, I just want the magic pill or something :wink: you’re in the right place here, loads of lovely people. I had the most amazing, friendly welcome. Best of luck xxx