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Shell shocked after new diagnosis

Hi, I’ve just been diagnosed with ms and to say it came as a shock is a bit of an understatement! To give you a bit of background, I’d not long returned to work after maternity when I got a strange numb/tingly sensation down my leg, ignored it as I thought it may be sciatica. A couple of weeks later I had the same sensation down my arm (same side of my body). Was advised to visit my gp as it may be trapped nerves, but the locum gp thought it was a migraine and told me to stop taking the contraception pill. After a couple of weeks there was no change so my normal gp sent me for an mri. 10 days later I got a call from my doctor so went in and she dropped the ms bombshell! I just don’t know what to do, I’m only 27. To make matters worse I got the news 4 days before my daughter’s 1st birthday. I’ve been able to book an appointment with a neurologist for Friday privately through work. I’m just scared about what’s going to happen next and what he’ll say. Any advice?

yes heidi take all the help and support that is offered and there is lots , I probably am not the best to advise you on much just dx last nov. your neuro and ms nurse will be the best to aid you ,and this forum to talk get information just to, not feel isolated .For now just take one day at a time, try not to worry, and enjoy your daugher . Please don,t let ms fill your mind, concetrate on the joy of her, till you get your appointment . good luck

Thats the best advice this old grannma can give you Eve

Hello Heidi and welcome,

You will feel all sorts of emotions, anger, why me, shock, frustration and you will finally come to accept. The help and support of your love ones will be a great help for you. Also your daughter will help you, her 1st Birthday, enjoy it and her.

When you see the neuro he will ask lots of questions, but make sure if you have any questions write them on a piece of paper to remind yourself. What ever you do don’t give him/her your list as they will just put it to one side. Tell them what symptoms are bothering you most so they can prescribe something to help you.

I wish you the very best and have a lovely time with your little girls birthday.

Janet

x

You haven’t been diagnosed just yet, your GP suspects MS?

My GP was useless and didn’t spot it, through a private referral. 3 MRI scans, a Lumbar Puncture to check my CSF and a battery of blood tests to check all manner of things, I got a concrete diagnosis (20 years of symptoms). To be clear only a Neurologist can diagnose you, with a number of criteria to back up the diagnosis. MS is a complex disease and they need to be sure. I tested positive for O bands in my CSF, wash of my MRI’s had different bright lesions… My bloods presented high ANA readings. Read up on the Macdonald Criteria.

The centred advice I’d have for you right now is this prepare for months of tests. Relax, breathe, you haven’t been diagnosed, your symptoms could relate to any condition, maybe even minor, the neurologist specialises in the central nervous system so you are in the right place. Eat well, relax, sleep and don’t get caught up with Dr Google, it’s a mine of mis-information.

Write down your symptoms, be specific and descriptive. If you can take a sensible person with you to the Neuro, do. It’s easy to miss want they say or get confused.

Come back and let us know how you get on, best of luck.