I’m experiencing so much anxiety at the moment.
Last week I had an appointment with my MS Nurse, it was arranged I was to start dmd’s. (Please forgive me, i’m new to all the terminology and medications as I was only diagnosed in late Feb and know very little).
I was asked how I was, and then my Neurologist checked me over - (had my first relapse in late feb where I then had Steriod Infusion and have made a good recovery 90%.10% damage).
My Neurologist then said that she wasn’t confident in prescribing me the dmd’s yet and arranged for me to have an MRI scan in 6 months time to check the progression. Why is this? If the dmd’s reduce the severity of the relapses, unneccessary damage ‘could’ be prevented if I were to have a major relapse within this time and taking the dmd’s?
Hope this makes some kind of sense.
I’m confused and anxious.
you have raised a good point, I think DMD’s are only given after 2 serious relapses. I know there is a view we should hit MS hard and early to avoid increased disability, I was given Tysabri after my 3rd relapse and had lost of my mobility by then. Hopefully you should be assigned a MS nurse to help you through this and this forum is great for information and support. We are all in this together!.
Peter
Hi
We can all appreciate what it’s like to be newly diagnosed, to have lots of questions going round our heads & not know what’s normal, or what to expect or what information we need to know.
Just back up what Peter said, the DMDs will have qualifying criteria such as a certain number of relapses within a certain time period. So it may well be that the neuro thinks you don’t meet these yet. I sometimes think though that octors have such pressures on their time that they don’t take the time to sit with us & explain things fully. However, I reckon it could be a good idea to call your MS nurse & ask them what the reason is.
Other than that I’ll just say welcome to the board - there’s a wealth of knowledge & experience from the users here, so ask any questions you need to & hopefully there’ll be someone who can answer them.
Dan
I don’t get this either. In all the literature that I’ve read it has been inferred that if you are prescribed beta interferons if you have a CIS (clinically isolated syndrome) then there is a chance that this will stop the MS from happening. I know that they have to have a protocol in place but it seems counter intuitive to me.
I was diagnosed last year Oceanblue and I had to go through exactly the same thing. I didn’t have active lesions in my first MRI but I then had active lesions in my second. I was then diagnosed and in February I was put onto Rebif. I had to wait 6 months between the two MRI’s and my relapse last year was the worst that I have ever had. It is a very anxious time
I found that supplementation really helped with my symptoms, in partular vit B12 (500mcg). I have also found that vit d3 (5000iu) is really important. You could try these whilst you are waiting. I did not take to Rebif, so I am again waiting to see my neurologist to see what the next step will be, possibly Copaxone but I am looking at trials and some of these look interesting.
For depression and anxiety, I was referred onto an eight week Mindfulness course. I found this incredibly benefitial. I was referred to a therapist and she really helped me through things. She referred me onto the Mindfulness course. CBT is really good too. You could ask your GP.
I hope that this helps.
Adrian x
Thanks for your replies. I did call my MS nurse, but she couldn’t discuss it with me because of the people around her ? - I now wonder what she thought about this.
My first relapse was a major one and I fear the next.
I have managed to book an appointment to see my Neuro for mid June (earliest booking) so that we can talk things through and for her to explain how she came to her decision. I feel better about that, it’s not too long to wait. In the meantime I must learn to keep my stress levels down.
Welshboy - Thanks for your advice on Mindfulness. I have the Jon Kabat Zinn book, I really I must have another read of that.
x
Hi Ob,
Try this; https://skydrive.live.com/?cid=eb9167b2b1a5fa3b#cid=EB9167B2B1A5FA3B&id=EB9167B2B1A5FA3B%21142.
It’s very good. Count to four on breathing in and out, stops your mind from wondering.
Also try vit d3 and vit b12 if you can. I’ve had a cold the last few weeks. I went cycling last Thursday and completely overdid it. I started feeling very strange, getting pins and needles, etc and thought I was going into relapse. I had cut down my vit d3 intake from 10,000 iu to 1,000 iu a few months ago as I thought I was taking too much. I upped my dose to 5,000 iu yesterday and I am feeling a lot better today. I don’t know if this is a coincidence but I do feel a lot better.
Adrian x
Thanks Welshboy, I’ll have a look into that. I’m glad you’re feeling better.
I already take 1 vitamin B12 1000 tablet, is this enough? It says that I should only take one tablet daily. I’ll buy some D3 too.
Thanks x
Hi,
1000 mcg is good. I take half as I can only tolerate this amount. Thanks. Yeh, try the track, it is good. x