Hi everyone I have my first appointment with ms nurse tomorrow. Can anyone tell me what to expect? She is visiting me at home. I’ve been diagnosed with RRMS 5 weeks ago and thanks to this site I’m beginning to get my head round ms but still feel very much in the dark and keen to start treatment. Thank u x
Sorry, I can’t help with the nurse stuff, but starting treatment early is an excellent idea, as all the evidence suggests the sooner you start, the better the outcome.
Hi Bluebell
The nurse will probably go through any symptons you have had or are having at the mo. She will discuss any other non MS ailments you may have had/have and want to know what meds you are currently on. She will discuss what treatments are available for you re MS eg I have amiltrytiline for nerve pain/tingling. As you have only recently been diagnosed she may discuss DMDs which are disease modifying drugs that you are offered if you have 2 relapses in 24 months-but as it is early days for you this might not be relevant at this stage of your illness.
I have RRMS and was diagnosed 15 years ago. After my initial relapse I was sympton free for about 5/6 years and never saw a GP or MS nurse/neuro in that time, but nowadays more is known about MS and there are more treatments available. My present MS nurse is great and much more knowledgeable than my GP so it is good that you are meeting one soon after diagnosis.
Hope it goes well
Cathy
Hi Thanks to both of u for your response. It really helps to know that u are not alone. My neurologist has recommended dmd as I have had 2 attacks in the last 6 months. I don’t really have any pain other than pins and needles in my right hand side. My arm was paralysed for about 6 weeks and my speech was affected and still is. I didn’t and still haven’t had any treatment, but I am still recovering it seems. Thanks again x
Hi Bluebell,
Seeing as your neuro has mentioned DMDs then the nurse might talk in more detail about those then. If she/you feel that they would help you then she will recommend you to consider which one to pick. Don’t feel rushed, when they offered them to me in Oct 2010 I took 6 months reading up and deciding. Then I gave the go ahead in April 2011 but as we had a holiday booked to Australia I didn’t want to start them until we returned. So I actually began DMDs August 2011.
All the best
Cathy
hi bluebell
read up as much as you can on all the dmds available. check if they have contra-indications with other meds.
for example a few are not compatible with LDN. i’d already made up my mind to try ldn so i was keen to choose a dmd that would be ok with it.
(i’m on copaxone)
don’t worry about it. ask as many questions as you want and dont be afraid of asking for time to make the decision.
good luck
carole xxx
Hi everyone, Thanks again for the advice. Carole, sorry to be ignorant but what is LDN? So much to learn xxx
Hi everyone, Thanks again for the advice. Carole, sorry to be ignorant but what is LDN? So much to learn xxx
It stands for low dose naltrexone and is an unapproved treatment for MS. You can read more at www.ldnresearchtrust.org.
Thanks whammel x
Hiya and welcome aboard.I would suggest you go to ms decisions site and it will talk you through all of the DMD available to you in a factual way. At the end you go through a process that asks you about your way of life and what is important to you etc and how you judge the various side effects and it comes up with what fits your life the best but in a clear way with the pros and cons of all of them in a table.
It is food for thought and may help you assemble your thoughts after the shock of dx. I think most of us used it.
I wish you well
Pip
Hi Bluebell,
Hope your meeting went well - let us know what happens.
Saw my MS nurse the other day -took my list of questions and symptoms - She referred me for physio, upped my dosage of Amiltriptylene (she tells Dr what she’s done) and referred me to Neurologist! Couldn’t have asked for any more help - except a magic wand to get rid of the horrible stiffness
in my legs.
Good luck, Jen x
Many thanks to everyone for the support. Have a good day. My appointment is at 3 pm x
Hi I have recently been diagnosed with rrms and am 32years old. I’m gonna have my 1st ms nurse appointment and am a little nervous/anxious about what happens during an appointment. Can anyone give tips?! Also I’m supposed to start treatment in September because ms seems to be active and in 8 months I have had 3 attacks/lesions. I’m really confused about the treat as almost all of them say no good for pregnancy and I don’t have children so I’d like to keep trying plus a lot of the side effects seem scary. I’m just feeling so confused and alone and considering if it’s worth start treatment at all. I guess what I’m saying is this is all so new to me that I just don’t know what to think. Did anyone felt like this as well?! How am I supposed to Cary on with my life with so many symptoms/doubts/blockages…
Hi Minieluna
you need to reach out for advice about pregnancy and MS.
fortunately I was way past the possibility of getting pregnant when i got my diagnosis.
I have heard on this forum that the MS behaves itself during pregnancy but then throws a hissy fit when baby is born.
this is something you can research.
If/when you get pregnant make sure you have lots of support.
the choice of Disease Modifying Treatments is entirely yours but if you go ahead with pregnancy you will need to make sure that it won’t harm the baby.
the best drugs for your ms (the most powerful) will not be best for baby.
some of the earlier injection types, Betaferons, Copaxone may be less problematic.
wishing you all the best and mentally knitting some baby socks!
xxx
Due to the Covid-19 restrictions my telephone appointment consisted of the same basic questions they’ve asked over the past 14 years. They don’t seem to be bothered with the gradual increase of functional problems or pains, but ask if I can dress myself, wipe my buttocks and if my bedroom and bathroom are on the same floor.