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Diagnosed today

Hey, I have had 2 mri’s, the last being over a year ago. (Due to a numb sensation on left hand side of my face) I wasnt given any word on results. My first mri showed some lesions and inflammation in some areas but neurologist wasnt sure. Had another scan 6 months later (this was the mri i had last year) and yes, no word. Had a letter from hospital saying i had been referred to anothet neurologist. That apoinemnet was today (overca year later) and i was told i have ms. I am completely overwhelmed. The original neurologist mentioned some areas but by no means that it was anything serious. I have gone a year thinking everything is grand and this is a follow up to be told BAM you have ms. There was an ms nurse there that took myself and my husband for almost a debrief. I feel silly but i am so upset. I keep crying and i feel i shouldn’t be. I dont know much at all about ms. I feel all i have done today is read. Im abit calmer but still feel completely out of my depth. The nurse said id hear soon for a meeting and to start talking about medication. Sorry for rambling but i feel lost. I have read over lots of posts. Not sure why iv added a post i just feel i needed to talk.

Hi Becca,

You’ve had a massive shock, and I completely understand why you wanted to write down your thoughts here.

The good news is that you have come to exactly the right place. The other good news is that your MS nurse is going to introduce some medication which s/he knows will help with the symptoms you have been getting.

A good MS nurse is worth their weight in diamonds. And by the sounds of it your nurse sounds pretty switched on.

In the meantime (and any other time) come onto the forum and ask any questions you have, anything at all, and if you just need to let off steam then there’s always someone here who knows exactly how you feel.

Best wishes,

Anthony

Hi Becca

Very unusually for me, I just read your post and it’s brought a few tears to my silly old eyes.

I think it’s the shock that it’s given you. To have no clue and then wallop, there you have it.

There is a bit of good news; the fact that you’ve had no clue has meant you’ve not spent a year worrying and waiting; fearing the worst. And also, the fact that you’ve not been suffering relapses during this year means that hopefully you have a mild and gentle pattern to your MS.

Once you’ve got over the shock (and give yourself and your husband time to get your heads round the diagnosis) you can start thinking maybe about taking a disease modifying drug (DMD). The idea of these is to reduce relapses and the severity of relapses. So that you can stay as fit and healthy as possible. Many people take a DMD and have no disease activity for years and years. Hopefully you will be one of these.

Have a look at the publications on the MS Trust website. There are a huge number which will begin to educate you in what you need to know about MS and about DMDs. You could start with https://www.mstrust.org.uk/understanding-ms/diagnosing-ms/newly-diagnosed-multiple-sclerosis There are a lot of links on there which could help with understanding MS, with telling people, and with DMDs.

As Anthony said, your MS nurse is a wonderful resource. You’ll find hopefully that s/he can help with all the questions that crowd your mind. And whether you just need to express some fear and anger (and that is quite normal, believe me) or ask questions, the community here will try to help.

Sue

Thank you all. Yes, ny nee neurologist who specialises is Ms said there were changes that make him believe i have ms. I have cried lots today alreday. I think i just need time. I feel im automatically thinking the worse. All your replies mean so much, thank you.