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First Meeting With MS Nurse

Hi All,

I saw my MS nurse this morning- she’s lovely! Was with her for over an hour, it was so nice to have a sit down and a full comprehensive conversation.

I now know the process… go see MS specialist neuro (QE Birmingham) who will sign me off for DMDs (after I’ve shown him I can walk 100m, piece of cake!) then back to ms nurse to get them. Best part is we get to choose which DMD we want! How ridiculous- they’re not allowed to recommend… So I’ve been sent home with 5 DVD “gift” boxes from the different manufacturers to choose. These bloomin boxes are more posh than fancy holiday brochures. Basically the manufactures are doing their best selling techniques- there’s even a keyring in one of them lmao. I wonder what I’ll be watching on TV tonight lol

Once I’ve been started on the DMDs I will have to see her months 1,2,3,6 and 9. Then will see her once a year and the MS neuro once a year for an MOT (blood test and MRI) just to make sure nothing’s getting worse.

I feel a lot happier now and so glad to be out of limboland and have a clear direction and I have a lot of confidence in my MS nurse. Just need the appointment to come through for Birmingham now! Oh and to decide what DMD I’d like…so what did you all choose and why? xxx

Hiya…me again!!! I think the ms decisions site is the best as it takes you through the process of whats important to you and how the product of choice will fit into your life style.

I dont know if I would do the dvd or decisions first??

The reality of your choice is often found on here when people post about reactions etc.As we are at the same stage with the same hosp but ms nurses from different boroughs it will be interesting to see if the process follows the same course.

At the end of the day Im of the view you read the info,take note of comments made by people using the option you choose,imagine how you will feel when faced with putting the neddle into yourself and how often,and which fits your lifestyle better and follow your gut.

If you make and informed choice it will be the right one…only time will tell how it pans out over the coming months but thats out of your control all you will know is that it was the right choice for the right reason at the time.

Take care Pip

Thank you beautiful,

You’re like a little guardian ange on my shoulder xxx

OMG! Sitting here absolutely stunned. I have only ever seen my nurse at my neuro appointment and once by chance in the hospital as we passed each other in the corridor. What’s more I didn’t recognise her until she spoke(!) because I only ever speak to her on the phone, and that’s about 4 days (if I’m lucky!) after leaving an answerphone message or two (or ten). Five or six appointments in the first year? That’s amazing!

Re choosing DMDs, the best place to look for info is the msdecisions website. It’s neutral (rather than the stuff in the manufacturer packs I suspect!), objective and pretty thorough info although the videos of injecting are a bit OTT; the reality is much simpler. There’s no “right” choice - all of them have pros and cons - just go with which one you think will suit you best.

First time round I chose Copaxone because I wanted to avoid any flu side effects and it was a subcutaneous injection. Every day injections also made sense to me because it meant I could get into an easy routine and would be less likely to forget. It worked really well for me for 3.5 years, but then I had to switch to another DMD. This took a while (long story) and I had some nasty relapses while I was on nothing (not a situation I ever want to be in again!).

Second time round I chose Rebif because if I had to have an interferon (and therefore potentially the flu - not everyone gets it), I may as well take the one with the best results in clinical trials. I started Rebif in June last year and while the side effects were tough to handle for the first 4-5 months, I’m fine now and, more importantly, it’s working! No relapses! YAY!

Good luck with your decision :slight_smile:

Karen x

Hi Karen,

I’m stunned at how you’ve been treated, isn’t it ridiculous how things vary between districts, counties and hospitals. Where are you?

Can’t believe I’d not heard of MS decisions before you two mentioned it. Looks great, will be going through it with a fine tooth comb tonight xxx

Thanks for posting this Sarah, I got my dx in march and am off to see the nurse at the end of June. Wasn’t sure what to expect as I’m not on any DMDs just vit d and think I’m starting a relapse, though don’t know…if that makes sense. My hands are aching and I’m finding it hard to lift Inge like pans from the cooker Good luck choosing, Chis x

Thanks for posting this Sarah, I got my dx in march and am off to see the nurse at the end of June. Wasn’t sure what to expect as I’m not on any DMDs just vit d and think I’m starting a relapse, though don’t know…if that makes sense. My hands are aching and I’m finding it hard to lift Inge like pans from the cooker Good luck choosing, Chis x

Hi Chris,

I asked my MS Nurse this morning “what classes as a relapse?”

She says any new symptom that lasts for 48 hours or more and causes difficulty in performing normal tasks.

SHe also said illness (cold/virus or infection) causes a worsening in symptoms of MS but this is NOT a relapse. Basically our immune systems stop looking after the MS to fight the infection so symptoms can flair up. After the cold it will carry on where it left before so within a few weeks we’ll be back to normal.

Simply CHris…how you been ill (not ms) in last few weeks? Or not? If not worth getting in touch with your neuro or ms nurse as you may need a course of steriods xxx

Thanks Sarah sorry about multiple posts my hands not cooperating!