I was diagnosed with RRMS less than a month after I turned 26. I have really truly found that speaking to others has helped me in a lot of ways.
knowing what I know now, I think it gives me even more drive. To push through everyday stronger than I was before. Take those “power naps” when I need them. Eating right, and listening to the body. Still at times have good days and bad days, sometimes I feel like I just want to cry... but I know that won’t ever help anything.
its time to pick treatment options and I’m nervous/scared. I have options of pills and injections since I’m nowhere near needing an infusion yet. If anyone has any opinions or words I would love to hear them.
We are all different, and I love to hear everyone’s stories.
I was diagnosed with Multiple sclerosis in late July of 2017 after a brain MRI came back showing lots of MS lesions and a spinal tap came back positive for high amounts of elevated protein 'o' bands. Due to the amount of lesions & 'o' bands, my neurologist believes I'd actually had MS for quite some time. If you wanna read my full story it's all in my profile. My neurologist immediately suggested Tecfidera as a treatment option and after reading up on it I told that's what I'd go with. My experience with Tec so far has been some side effects in the beginning which tapered off after some time but of course we all may react differently. Click for Info on Tecfidera
I ahve been looking into my options and Tecfidera is one, and Aubagio is the other. I just recently got some great news about my lesions and the aggresiveness of things. My case truly is mild so my neurolgoist said Aubagio is not as strong and less side effects. God willing and from a medical perspective I will not ever have an aggresive form of RRMS.
Everything has a side effect and I tell you what that is the scariest part! Definitely leaning toward trying pill form first too, rather than injections. Just gotta kind of ride the wave and let it come as it does.
I take an infusion so I really can't give you advice on medications. I started with Avonex and it didn't work for me. A good place to look though is the MS society they have brochures that give all the different treatment options to compare. If something doesn't work for you you can always try something else.
I too am fighting and fought. I work full time now and feel pretty good. I still have good days and bad days. I sometimes want to cry and I do sometimes its ok to cry.
I do the monthly infusions of Tysabri. Haven't really had any problems with it the last three years. I am also afflicted with chronic back pain from spinal scoliosis, I have had two spinal surgeries, and do not wish to have any more surgeries. I wish I could keep working full time, I wanted to do more than 35 years, but it wasn't possible. I can and when I am able I work, I do it as a volunteer at a nonprofit organization. But with MS, you never know what kind of day you are going to be having that day. Sometimes, all you can do is cry most of the day, which is okay.
Infusion wasn't in options I feel like I wouldnt' have minded that. My second neuro immediately said avonex and no other options, so now that I'm with someone else and have options im actually excited I have a few options. She gave me all the brochures to look over which is also great.
I love that you said sometimes it is okay to cry. I'm 26 and I think of how I want to have children someday, and how these drugs can effect that and so on. I try to keep thinking of today and not so far ahead. I have my follow up on 2/15 to pick up what option I want to try first.
I also am new to this, December 2017
I have not started a treatment yet but I have been doing ALOT of reading on the three options my Neuro gave me. I guess I just suggest you read up on each option and read sights other than the drug companies. But again I'm new and haven't started anything yet....so.
I just wish you the best on this journey!
have you figured out any treatment options yet?
Hi, I'm still not sure and I don't have my follow up until the 26th. I think I am leaning most to Tecfidera for now, because it seems to have a lower rebound effect (wich os somthing the drug companies dont talk about I read about other msers having it happen) also it is out of you system as soon as you stop taking it. Yet my Neuro seems to want me on the infusion of Tyabri and I'm just kinda scared of the JC virus and pml stuff, even though the other drug has had some cases of it. But the infusion has the best stats on reducing lessons, relapse and brain atrophy. But the longer you are on it the more your risk of PML goes up, so that's why I'm not jumping right on it, if I do the pills I'm going to request regular blood tests to be sure we know when i contract JC. Sorry im rambling I still don't know.... I'm doing more research and going to write a list of pros and cons before my appointment. Also my neurologist told me that they can work with the infusion to allow you to get pregnant, so there are ways you can still have a family! Wishing you the best, and please tell us how it goes :)
please! Ramble on! That’s what I put the post out for. I’m feeling the same way as you. My first neuro immediately said avonex and the more research I have done on injections I don’t like the idea. I want to try pills to start. My two options here are open. My neuro recommended Aubagio because of how mild my disease form is and where it is standing right now. It’s also scary because you want to do what’s best for you. It’s terrifying because everything has shitty ass side effects. I can’t stand to read or look into them. I’m also going to be at a “child bearing age” 4-6 years from now depending if I want a kid or where I am in life so it’s all just scary.
Me I HATE bloodwork. That’s what is hard. Aubagio I don’t like the hair loss thing but I mean I’m going to have to take some and lose some at this point with anything. I also want to be able to function normally and not like I have a flu after injection day. My followup is the 15th so I have to get my thought out decision down and confident in my head which it’s scary until I am on something for a bit and get used it I won’t feel confident. Lol
thats nice tochear about infusions and things like that because honestly, that part made me upset to think about. See Aubagio said if stays in UP TO 2 years.
I need to do a solid pros pros and cons list between the two pills myself. I asked my neuro what she would go with where I am st and she said Aubagio but in the end it’s my choice. All I say is follow your gut what you think you need!
thank you for your update as well, I will keep you informed, and please do the same for me! Message me anytime :)