@EmilyMac

Last reply

EmilyMac

Treatment advice

Hello! I’ve been told today how amazingly positive this site is and I can already see from just having a little nose it’s just what I need! I was diagnosed 3 weeks ago, shock probably was an understatement. I haven’t googled anything really, just had conversations with the Neurologist and my nurse. I’d love some treatment advice. I need to decide what to start my MS journey on and have had a brief read of what I’ve been sent but wanting to gain a little advice/support from everyone else? Thank you in advance 🙃

joycewhite

@joycewhite

I'm new to ms also,what does a neurologist do? I have to see one tomorrow morning

EmilyMac

@EmilyMac

Hello! He arranged and analysed my MRI’s and has spoken to me several times Over the past few months regarding symptoms, and now More recently treatment.

joycewhite

@joycewhite

Thank you for letting me know Emilymac

Highlander

@Highlander

@emilymac Hi and welcome to the club. The link below might help you out. Feel free to ask anything you like we'll try find answer. https://www.mstrust.org.uk/about-ms/ms-treatments/disease-modifying-drugs-dmds Under your post above you'll see some boxes relating to the things you mentioned click on them and it'll take you to other posts made it. Welcome again.

watsoncraig

@watsoncraig

Hi @emilymac treatments will depend on which type of MS you have, RR/SP or PP. RR and it maybe Tecfidera, RR can become SP and I am unsure of treatments, PP the only treatment is Ocrevus which slows the progression. Sadly there is no Silver Bullet at present (sorry not what you want to hear) and we live with this forever. Ask here and answers from Warriors will come, avoid Dr Google

GlawsDan

@GlawsDan

Hi @emilymac I’m glad you have found this site soon after diagnostic. If your consultation was like mine, you were diagnosed and then given a few drugs to consider, and about which you should read. I’m going to ignore the fact I found this unbelievable at the time...surely I should have been advised what was best! Different people will take different strategies to tackling what is a degenerative, incurable (at present) neurological condition. You’ll have those that do not want to take any drugs and manage a response with natural solutions and those that believe the only strategy for them is to take as strong a disease modifying treatment (DMT) as possible. There will be a range of responses inbetween. I, independently, came to the view that if I am going to be going downhill, my best approach was to slam the brakes on ... so I took the most potent drug suggested by my consultant which was Tecfidera. I’ve been on it 4 years and it has worked well for me, no complaints as I have have found its side effects trivial when considering the beast that it keeps from my door. Finally. (I know you didn’t ask for this) I have found this site has helped me keep a lid on anxiety as it enables me to gain a feel for where I am in the MS Universe. Therefore, enables me to put some realistic structure around my thoughts about my/my families future. All the best Dan

Stumbler

@Stumbler

@emilymac , shock is definitely the right word for the situation. And that applies whether the diagnosis was expected or not. Just take your time whilst you work out what this diagnosis means to you. it's the start of an emotional journey, similar to a bereavement, where you grieve for your old self and learn to embrace your new self. As far as treatment is concerned, the following might help :- https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid Your Neuro will fall into one of two camps. The conservative Neuro, who will offer you the least effective treatments to start. You'll move up the treatments if and when you accrue further damage. The other type of Neuro is proactive, wanting to start you on the most effective treatments from the start. It's your body, so it should be your choice. It should be a treatment that suits your lifestyle and reflects the amount of risk that you are willing to take. So, do your research into the treatments, so you can play an active part in any discussions on this subject.

Henrietta

@Henrietta

Hi @emilymac I’m in a pretty similar situation to you - I was diagnosed (over the phone, thanks COVID) with RRMS ten days ago and was given the choice between Tecfidera and Aubagio. It was pretty overwhelming, even though I was expecting it, and I’ve been on a very steep learning curve since then! You’ve come to the right place - this site is great - you can do a search on the DMDs you’ve been offered and see what people have been saying - and everyone is so supportive and lovely. I also found Dr Aaron Boster’s short videos on YouTube really really helpful, I’d recommend them. I also emailed a few follow-up questions to my MS consultant (whom I’ve not yet met) and got helpful replies. I talked to my GP and to my acupuncturist (her partner has MS). All the feedback I got really helped me decide on Aubagio - I feel it fits in best with who I am and my lifestyle. Haven’t started yet as I only emailed my consultant with my decision yesterday. Anyway just wanted to say hello and welcome to the club no one wants to be a member of...

EmilyMac

@EmilyMac

Thank you all so much! Today’s taken a slight change through a phonecall from the hospital and I’m now having to go back in next week for yet another MS and CT. The treatment discussed with me yesterday now doesn’t apply as I will need something different. My heads whirring with questions and hundreds of why me’s tonight 😞 But tomorrow’s a new day😏

Vixen

@Vixen

Hello @emilymac, welcome to Shift. You have done the right thing in not googling too much; always stick to official sites like this, MS Society/Trust. This has been a horrible time for anyone to be diagnosed as the world is reeling from Covid. No matter how well anyone absorbs the diagnosis, it's a massive shock to the system. Most of us would say it takes up to a year to process things. You need to be really kind to yourself at the moment and not push yourself too hard. Don't make any big decisions for a while and, when the neuro talks to you about treatments - DMDs - take time to research and work out the best option for you. Do ask any questions here, someone will always respond. All the best x

NDRBZZ

@NDRBZZ

Yeah only cool people here 😎 Welcome!