Well as I mentioned in a couple of posts, I had my appointment with my neuro this morning and he diagnosed me with RRMS. I am so pleased as I was terrified he wouldn’t. He then went on to say he wanted me to start DMTs as I had at least 3 relapses last year which have left me with some degree of disability each time.
I mentioned my migraines but he said they were not connected which I think is a load of b***ocks! He took my notes of symptoms that I had taken with me and asked if he could keep them. He said it would be easier for him to do his notes later
I then went on to talk with the MS nurse. She was great, talked with me for quite a while but everything she told me I alreday knew from here and other sites. I got my bloods done, she gave me her card and said I couldn’t start the DMTs for 13 weeks!!! Said she didn’t know why but that it was regulation.
I am happy about the DXs but did get a little tearful as I was getting my blood taken. I have spent so long fighting to get where I am today and now I feel a little overwhelmed.
It’s always a blow, even when we expect it. Thank goodness you know now though!
Check out the msdecisions website to make a decision about DMDs. There’s no “right” answer - just pick the one that you think will suit you best. And about 10 weeks from now, start calling the MS nurse! (It takes a good 4 weeks for the drugs to arrive because of all the paperwork, so the earlier you start nagging, the earlier you might get them!)
I know what you mean about migraines. Most neuros will say that they aren’t related, but it is a fact that a higher proportion of MSers get them than non-MSers. If they are a big problem, you really need to see a headache specialist.
Good to have an MS nurse now - make sure and ask for help whenever you need it. They tend to have too many patients and too little time, so you will probably have to get used to leaving a lot of answerphone messages! But at least you know there is someone you can call.
It is a relief to have the diagnosis isn’t Lindsay? You will be sad too - you are grieving for the lost you. But hang in there, you’re going to get some help and hopefully it will work well for you. Remember we all understand how you feel. Keep in touch, thinking of you, Teresa xx
I have had a funny few days. Between laughing hysterically and on the verge of tears I don’t know what im at!
Also got very cross with my husband yesterday (didn’t tell him though). I didn’t get so much as a hug on Wednesday when got the news. I know we knew what it was alreday and I wanted my DXs but it still would have been nice. I hear him and my mum telling everyone about how im coping so well and that im glad to finally have answers but I still want to scream and punch something but I can’t because “im such a strong person”!
Don’t you dare fall into the “I’m so strong - I don’t need hugs” trap!!!
You are going to need people you can be honest with. “Real” people that you can get a hug from. Don’t shut them all out from Day 1. Don’t let them shut you out, albeit unintentionally.
They need to know that this is hard and that, yes, you are strong, but that you are stronger with them beside you, and that sometimes you will need them to be the strong one.