It’s 3.30 in the morning and I was diagnosed less than a day ago. Reading some of the stories I feel ‘lucky’ with the speed of the diagnosis. Had my first symptoms June 18th and spent 3 days in hospital for MRI, lumbar puncture and blood tests. Saw the consultant yesterday and he diagnosed ms based on the lesions in my brain and spine, as well as antibodies in my blood. Been on gabapentin for a month or so and he has said to use it to manage my symptoms. Also ‘lucky’ as at the moment the majority of my symptoms are sensory related; numbness, tingling, shivers and the band round my chest. Some pain in arms and hands, a couple of killer headaches, tiredness and some balance issues. Still a little mind blown at the moment. Caught up in thinking about the dvla, insurances and can’t help having images of walking sticks in my head. I’m a lazy 45! May be able to get into a trial near me which will help trick the antibodies but I may be too new to be accepted. I guess that the condition is such a build up that there’s no urgency. Seeing these guys in 6 weeks and the consultant in 4 months. Told me to contact him if the symptoms change but forgot to aski how I did that! Feeling like I’m falling at the moment. Had to tell the kids (14 and 15) which was very difficult. Can I ask questions? What’s an ms nurse? Not sure about the different types of ms that people are talking about. Perhaps it’s too early for the consultant to tell? Loving the ms hug-not!
I just wanted to say good luck. I am still a limbo lander and so I know that 3.30am feeling very well.
I hope things start to become clear for you soon, having a clear direction is part of the process I guess.
Welcome to the MS crowd, you’ll find anyone has a good listening ear and very friendly and helpful. I know I have.
You’ll receive a letter from your neurologist confirming his diagnosis, in which he’ll tell you which type of MS you have. There’s DMDs available for Relapsing Remitting, but not much if anything to prescribe for Secondary or Primary Progressive MS.
Telling the DVLA isn’t an option, it’s mandatory, and most likely you’ll end up with a 3 year, rather than 10 year drivers licence albeit you’ll loses the category of big trucks and PSVs. Advise your insurance company of the diagnosis but they can’t load your premium because of it, but do tell they as they will use anything to wiggle out of a claim and not telling them will be a big enough excuse.
If you need to contact your neuro, just call his secretary at the hospital. You’ll also get an introduction to an MS nurse who are part of your hospitals neurology team and work closely with your neurologist. I’ve just been invited to attend a days seminar called GETTING TO GRIPS WITH MS, ask if there’s a similar meeting near you.
You should also find out where your nearest therapy centre is as they can offer you physiotherapy and more check it out here: http://www.mssociety.org.uk/near-me
Good luck, it will take some time to sink in, during which you’ll go through some huge emotional swings while you come to terms with it all, but feel free to come on here and rant, chat or whatever you feel the need to do.
In answer to your questions:
What’s an ms nurse? An MS Nurse is your main point of contact that you would deal with. So for any relapses you have, the nurse will record and help you with managing them. Sort of like a ‘middle man’ between you and the neurologist but they do have important roles - my MS nurse is my lifesaver and has help me out with so much! You should receive details of who to contact in a letter shortly. If you don’t get the letter and need to speak to someone, call your hospital and ask who the contact MS nurse would be. They should be able to help out and provide details.
Not sure about the different types of ms that people are talking about. Perhaps it’s too early for the consultant to tell? It seems like it is quite early in the stages so the neurolosigst may not be able to give you a definate answer on that. RRMS (Relapsing Remitting MS) is where you will relapse - MS will flare up, and then the symptoms will go. The relpase could last a couple of weeks to a couple of months. This is the most common type of MS. Secondary Progressive MS is where symptoms gradually get worse. Relapses may still occur but without full recovery of the relapse. Primary Progressive MS is similar to Secondary but the relapses do not go and gradually get worse.
Its probably a little early to be put on a trial as they need to know how long you have had MS, the type and lots of other things. I tried getting on a trial but I hadn’t had MS for long enough.
I’ve got the hug at the moment along with other things but the hug is actually the worst out of all of them! Its mostly on my waist line, although sometimes travels to my chest. It’s lots of fun! My MS nurse recommended Gabapentin but your nurse/neurologist may recommend something different for you so its worth asking for a temporary treatment for it.
Also had to tell my 10 year old brother about me and I was terrified because I didn’t want to scare him but he knew something was going on. turned out he was relieved I had MS because he thought I was dying of cancer or something! It was a scary moment having to tell him but he does now understand why sometimes I cant run around and play football with him all day long. It is always difficult telling children but it’s better they understand why certain things are happening.
Hope you are ok and managed to get some sleep!