Hello all. After a incident of facial numbness in January and MRI followed by a current episode of almost full body numbness and tingling I was diagnosed with MS last week. I’ve just had a telephone consultation with my doctor for the first time who went over treatment options. I feel absolutely overwhelmed with treatment options and the associated risks. I honestly feel like they’re all not great options and I’m unsure what steps to take next. Some options have been automatically ruled out as I’d like to start a family in the not so distant future but I’m interested in how people came to their own decision on which route to take. Is high effecicy worth the risks? I’d welcome any insights people have please as I naively thought that this would be a straightforward decision. Thanks
Hello Carlywoo, welcome to the forum.
I’m sorry to read you’ve been newly diagnosed with MS, and seemly quite young.
Treatments, as you’ve clearly discovered, are confusing; there are many options and if you don’t get on with one they usually let you try another, and more if you need to. There are two main kinds of treatments - those designed to treat symptoms and those to slow progression - it sounds like you’ve been offered the latter.
I can’t see that they would expect you to make a decision after just one telephone consultation, in fact I’m sure they won’t, so don’t worry, take your time.
Have you been assigned an MS Specialist nurse? They’re usually a mine of information.
There is a website I’m going to link to (if you don’t already know about it), the MS Trust Decisions pages, designed to help you with the exact choices you now face. I’m linking you to the home page but you’ll see several other pages. It’s easy to follow and I think will help you.
If you want to talk to anyone already on one of the treatments, then someone on this forum may have experience of it, so come here and ask.
Here’s the link to the front page…
And here’s a link to the page on DMDs - many MSers have found this one useful…
Ben
Hello Carlywoo
I’m sorry you’ve had to find your way here. In today’s world of social distancing and telephone appointments and diagnoses, it seems to be even harder to have to come to terms with MS.
Ben has given you an excellent answer and the right links for you to read up for yourself the information about treatments.
As you’ve said you want children in the not too distant future, I suspect you’d be guided by your MS nurse (when you finally get a phone appointment with him/her towards Copaxone. It’s the only disease modifying drug (DMD/DMT) that you can take while trying to get pregnant. It has a lowish relapse reduction rate, but a smaller risk of side effects. These are the considerations when you look at the various drug therapies - relapse reduction versus side effects.
Best of luck with your journey to an appropriate treatment for you. Come back here with any thoughts, questions, worries or fears. There will always be someone who either can help, or is going through the same recent diagnosis worries.
Sue
Hello Carlywoo, I’ve just been through this myself only a month or so ago! I got very overwhelmed at first and thankfully an MS nurse agreed to meet with me and my husband to talk me through the different drugs. I too am wanting to start a family so Copaxone seemed like the best option for me. I would try to get in touch with your local MS team sooner rather than later as even when you make a decision it can take around 4 weeks until you can even get it as it needs making up. Also if you take Copaxone you need to be shown how to take it. I have to inject myself 3 times a week, but it’s super easy and you put it in a pen type thing. I hope you’re ok? I only got diagnosed 3 weeks ago so I know how difficult and confusing things are right now. Sarah
Can’t speak for anyone else, but when presented with what appeared to be a dizzying array of choices of treatments, I discussed it here and with my partner, made a list of each one with their good and bad points (relapse reduction v side effects), and then went for the one which scared me the least! Talk to the medics, and see if there’s one that stands out in either direction - either for or against. But ultimately it’s your decision - you have to be happy with it. Good luck!