So I was diagnosed yesterday morning. I knew diagnosis was probable in the future but I expected yesterday’s appointment to be about referring me for a lumbar puncture/EVP so it was a bit of a shock even though I’ve known for months I’ve got MS. As it turned out the neuro said he had enough evidence from my history and the MRI so at least I’m being spared a lumbar puncture! I had a blood test while at the hospital to check for NMO but the neuro thinks it’s unlikely. I’ll have a further MRI in December and he’s going to ask his MS nurse to get in touch to discuss meds etc.
So … I have questions!
When should I expect to hear from the MS nurse? I’m sure this varies all over the country, I’m under the Tunbridge Wells hospital if anyone has experience there?
How long do NMO bloods take to come back? I understand they’re sent to Oxford?
I’m going to have the meds discussion with the MS nurse, but from our brief chat about DMDs yesterday I won’t be offered Lemtrada as a first line which I was a little disappointed about as I wanted to hit it with everything possible from the off, but will be offered Tecfidera or another oral medication that begins with T, can’t remember the name though. Does it sound right that I won’t have access to Lemtrada? Has that been the experience for other people too?
Finally, any advice for telling my nearest and dearest? My husband knows as he was there with me yesterday but I’ve got to tell my dad, brother, my very anxious mother and my fourteen year old son who has already had a really rough couple of years bless him.
I understand I’ll need to inform the DVLA? At what point do I do that? Immediately? When I’ve spoken to the MS nurse? I’m on my husband’s insurance - I take it I have to inform them? Is there anyone else I need to tell? Can’t think of anyone but thought I’d check.
Hi again, I can’t answer any apart from number 4 as Im not at that point yet, neurologist says he 98% certain.
i just said to my lot that it’s not going to stop me from carrying on as normal as long as is possible, my dad has had ms for 25 years and it’s not put him on his bum yet so I will follow his example.
Just take your time and process it your self if you can before you let others know xxxx
I’m sorry you’ve had the diagnosis. I know that you were expecting it, but not yet and certainly not yesterday.
And in a way, I think maybe actually hearing the words is different to knowing that you have MS. And once you know you can never not know again. So for that I feel for you.
Then again, now that you know, life can get moving again. And whilst it’s a horrible thing, at the very least now that you know, you are out of that dreadful land of limbo!!
Your specific questions are probably all going to have similar answers.
The MS nurse, that does vary all round the country. Some do home visits and some do not. Some will get in touch very quickly and others wait a while (maybe depending on their case load.) Maybe you could phone the neurologists secretary and ask?
NMO bloods - I have no idea. I’ve never had one, but then having an LP probably precludes the test. I’m sure it’s a belt and braces thing. But probably DMDs won’t be decided upon until the rest comes back. That’s something you can ask the MS nurse.
DMDs - Lemtrada is generally only offered to people with very highly active MS. And although it comes with a great big relapse reduction rate, it also comes with a huge amount of risk. There are many people who have a lower relapse reduction (and therefore lower risk) DMD who are relaps free for years and years. So it actually might be a good thing. But have that conversation with the MS nurse.
Telling friends and family is another thing that only you can work out. Get easy for some shock and OMG moments. Some people will expect that you’ll be in a wheelchair by Christmas, others will be more relaxed about it, waiting for you to tell them how you feel. Have a look at Telling people about your MS | MS Trust It might help.
Tell DVLA quite soon, have a look on their website. They ask you to complete a form and will issue you with a 3 year driving license. It won’t make any difference to insurance. Having a license is all they care about.
As Louise said, take your time, get used to it yourself. Keep talking to us, we will do all we can to help, even if it’s just so you have someone to get angry about it with. We do understand. Not every feeling you have is going to be happy and positive. You are almost certain to be furious at times and won’t necessarily be able to share that anger with your nearest and dearest.
Hi Nic Your query about the DVLA … Knock out a letter that says "I have just been diagnosed with MS. … “Insurance company have been informed” Now use the same letter for the insurance company, quoting your husband’s reference, that says “DVLA informed” Get them both in the post and forget about it until the letter comes from the DVLA. Sorted! Geoff
Absolutely, this is not going to change anything for as long as possible. I work full time and have just signed up for a Masters … I did have a bit of a wobble but on the basis that it might be now or never, I’ll stick with it!
I think I’m almost there in terms of getting my head round it as I’ve known for a while really, I’m a little bit teary here and there but not too bad. My friend reckons it takes a few days to ‘hit’ if you know what I mean, but I feel ok at the moment. I’m going to tell my son on the weekend so he’s home for a couple of days and can ask all the questions he wants.
Thanks Sue It is a relief to know I’m not going mad and that I’m being taken seriously, and as you say things will start moving now.
I’ll give the MS nurse a while and then get in touch I think. I’ve been reading about how massively overworked they are so don’t want to make them hate me before we’ve even met
I’m dreading telling my mum which sounds terrible but she worries about things to the point she gets ill and she’s not great at the moment anyway. If there was any option I probably wouldn’t tell her but we all live in the same village and it would be awful if she heard from someone else.
Thanks for the link … I’ve printed out the smaller publications and ordered copies of the larger ones (will make a donation).
Good. That’s what you need - to keep the momentum going so you can start on a DMD soon.
You could start to write a list of things you’d like to know, it may be that your MS nurse already has a structure for her appointments with the newly diagnosed, but there might be questions that you have which go out of your mind at the time.
pay consultant told me to contact dvla straight away I inform them, so I did soon as I got home, they sent a form out can’t remember the number of it, filled it in told them about ppms and bi polar type 2 they sent another form back for me to fill in about the bi polar. Thought I was going to get licence revoked but got 3 yr lisence then told insurance
If you want Lem push for it. The NICE NHS prescription criteria is the same for Lem as for Tec - “active RRMS”. If you tick the box for one you tick the box for the other. Withholding Lem and prescribing Tec is just a neuro preference for going for an “escalation” approach to trearment -i.e. Trying you on a drug with less side effects (and which is less effective) and seeing how you respond and then escalating you to more risky (more and effective) drugs if needed. If you can persuade him you under stand the risks/ benefits of Lem compared to Tec, he may (should) be prepared to let your informed choice take priority over his preference. Lots of neuros do. I was diagnosed June 2016 with numb toes (cleared up with steroids). I’ve had no further clinical relapses but a second MRI (June 2016, my first was March 2016 when I was diagnosed CIS) showed one new lesion. This was enough to show I had “active” RRMS and qualify me for Lem. My neuro supported my choice as I could explain the risks/ benefits. I’m 6 weeks post round 2 and doing well. No relapses and no evidence of further damage on my last MRI. Tec seems to be a good drug and works well for lots of people - and Lem isn’t the right choice for everyone if you are worried about the side effects. I was more worried about the Ms and am grateful my neuro supported me - so if this is your clear preference push for it. K x
I’ve got a little list of questions on the go already, I keep it on my desk at work as that’s where my mind does its best wandering I jot them down as they come to me.
I think the only thing that’s stopping me is that I’m currently waiting for a blood test result for NMO. It should only take another week or so. I just don’t want to tell them its MS and then have to tell them it’s something different. And I don’t want to tempt fate by telling someone official its MS, silly I know!
Great to hear you’re doing so well following the second Lemtrada infusion.
Before I was formally diagnosed I was certain that Lemtrada would be my DMD of choice, with Tec as a close second. It sounds as though the options available to me as it stands are Tec, another oral med that I forget the name of at the moment and three different injectables which I’m not interested in.
I plan on doing lots of reading prior to my appointment with the nurse and will be ready to push for my choice.
