Reply To: MAID

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itsmewithms
2 weeks ago

As @stumbler posts this is one of those questions you really can’t change your mind on. There are some bleak days for each of us. When I have one of those days I pick a good movie, a funny book or call a friend that I know will cheer me up. There are also good sites like this one full of people that understand, Roger’s site he mentions below, Aaron Boster on UTube to learn more and I always like to watch (and rewatch) Life of Seb on Utube. In video #40 he discusses depression. https://www.youtube.com/watch?v=AgKozlRhT7I&list=PL6ER_vJj2m6LvGc6UsWB1pehBPNtEiaTA&index=41&t=182s

I’ve never taken Tecfidera but when I pull up serious side effects occasional depression comes up but MS can cause depression on it’s own so they aren’t certain if there is an increased risk. You do mention suffering so I sense that you are having pain. Check in with your Neuro office regarding this issues and ask for relief. There is also a nurse line for Biogen that should be available to you. When I look it up in the US I see # 800.456.2255

I used to be able to determine something as “MS related” if it was odd but there was no pain related to it. Now it seems that I have more pain related to my symptoms so checked out Aaron Boster’s (Ohio US MS Specialist) video on pain – https://www.youtube.com/watch?v=UtFmXCDg_Vo

I’m not familiar with the term “MAID” but it may be related to the term “advance directives” we use in the US for the legal form we fill out to indicate our care directives. In reality we should all have one (our church had a workshop on filling one out that I couldn’t attend) and I know my family members with terminal illnesses had them mom (Parkinsons), dad (MDS) and sister (breast cancer) did as they neared the end of their lives. They were very helpful as we knew their wishes.

I feel MS is more manageable than the diseases they were facing and with so many advances being made and ways to manage symptoms I’m still optimistic about my future. There is much I still want to do and see. It may be different than how I envisioned it, that is I may take a train ride through France instead of a bike ride 😉 but it will still be France. I really want to get to Vienna if anyone has an idea how I can get there ;->

One thing I do from time to time is create a “vision board” or page of pictures and/or words of things I would like to do and post it in a visible place. Every day – or week depending on the goal – I try to do something to advance the goal. It may be finding a book or a website to research what I want to do or where I want to go or contact someone that has done that or been there. A little something to make it more real.

I’ve just switched from Rebif to Ocrevus. I was initially on Copaxone. When I look through the efficacy Rebif and Copaxone are low (which some would argue is a good starting point for RRMS while others would say to hit it hard) and Ocrevus is high. I see Tec listed as a medium. If you don’t think it is holding you any more it may be a good time to have that discussion with your Neuro. Aaron discusses how to decide when to change DMT and how to discuss a change with your Neuro

Tecfidera has an interesting approach in fighting MS that sounds like it works for many and maybe did for you before but no longer is. I had never looked into it as it was never raised as an option for me. Aaron Boster explains https://www.youtube.com/watch?v=Gbo70-WxYmw

Aaron’s concept on patient centered care and where he thinks MS treatment should be now and moving towards – I have to agree this is pretty exciting

A lot of material from Aaron but also Seb and Roger’s blog. As you can tell I have been spending a lot of time at my PC lately 😉 reach out if you want to chat-