Choose Wisely

When it comes to doctors, I always follow instructions. When I’m sick, I take the medicine they give me. If I have a pain, I rely on them to tell me how to get rid of it. When I was pregnant, I didn’t even bother with those pre-natal classes. My entire plan was just to do whatever the doctors told me to do.

When it comes to MS, my usual modus operandi is letting me down. I’ve been very surprised about how much has been left up to me. Particularly since the “me” in question is a fairly uninformed rookie when it comes to serious medical issues. What drugs do I want to take? Do I want to modify my diet? Is physical therapy the right choice for me? Do I want to take vitamins or supplements?

There’s a big part of me that’s still waiting for the instructions. I want to be handed an MS manual that will tell me exactly what to do and promise me specific results. Sadly, there’s no manual. I get to choose my path, and those choices will have an impact on the quality of my life. It’s a lot of responsibility, and sometimes that can feel overwhelming.

The bright side is that even with a disease that none of us would choose to have, it’s kind of nice to have some measure of control. And that’s what choices represent. Choose to eat better to keep your body strong. Choose to try yoga to keep your balance steady. Choose to learn a language or do a crossword to keep your mind sharp. Choose to accept support. Choose to live well.

We’re all at different stages of this journey, but within that framework, maybe all the choices are a blessing. Let’s make good ones!
Tags Healthy Living, Treatment      19 Appreciate this
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Katie

Katie Jennings, Blogger

Katie Jennings keeps busy juggling a son, a husband, a job, an old house, a bossy cat and unpredictable Vermont weather. She was diagnosed with progressive relapsing MS in December 2012. She blogs about all of it at http://steadyshegoes.com.

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    23 Comments

  • Avatar
    mschangedmylife-com  Feb 21, 2014 10:45 AM
    I was constantly on meds and did what I was told when I was younger, but now I usually end up doing the opposite of what I'm told. It's served me well in the past, but I always wonder if it will be too late before I learn that I should have made other choices. I overhauled the diet, exercise 6 days a week, and try to keep my brain sharp, but I just can't get on board with meds.
  • Avatar
    jaksmom  Feb 21, 2014 10:53 AM
    This has been a huge adjustment for me, too. It was shocking when my doctor gave me a list of websites, and to research medications for my next appointment. Wasn't he going to prescribe the best choice? I, too, am learning to make these decisions.
  • marsha   Feb 21, 2014 10:54 AM
    M.S. changes everyone's life. I've dealt with this disease 40 plus years. My biggest lesson was to use the tools that are necessary to give yourself a quality of life that can change daily. I find I tell my neurologist what I need at this point. One must be very educated about the disease to be able to cope.
  • Clive Whiteside   Feb 21, 2014 10:55 AM
    With MS you learn to listen to your own body this might be strange but it is a help
  • Lauren   Feb 21, 2014 11:26 AM
    I also wish I had been handed an MS instructional guide when I was first diagnosed. I'm only 20 years old and I don't feel confident in any decision that I am making in relation to my MS. I would give anything for someone to tell me exactly what I need to do because the pressure of handling it on my own has become so overwhelming! Thanks for the post - it's nice to know there are others out there in the same boat :)
  • Celeste   Feb 21, 2014 11:32 AM
    After a recent visit to the ER for a kidney stone, I decided to review my medications and supplements. I discovered that some of my supplements could affect how some of my medications metabolized and that at least one could increase the potential for kidney stones. Further research led to the discovery that some of my meds were causing problems that required treatment with other medications! I had been relying on my doctors to prescribe medications for my symptoms, trusting them to know what works with the stuff I was already taking. I suggest that everyone review their medications, vitamins, supplements, and OTC meds with their physician or pharmacist at least once a year and research any new medication thoroughly for side effects or interactions BEFORE you take it. By the way, the ER doc prescribed a medication for me without asking me what meds I was currently taking. Thank goodness, I decided to look it up before I took it. The last thing I need is another med that causes dizziness, drowsiness, depression, anxiety, sleeplessness, twitching, headache, etc.
  • Gail   Feb 21, 2014 11:37 AM
    I also have been left to get on with it. Diagnosed rrms in December, ms clinic 3 weeks ago and have now (after 9mths of recovering from a severe episode) been told i can have ms drugs tho ive still to decide what one after reading up and going to ms decisions site and also still waiting 3 weeks for my painkillers from my own clinic as the letter from ms clinic hasnt gotten there yet!!
  • Avatar
    mud909  Feb 21, 2014 1:27 PM
    I like being responsible for some choices. I have had to be proactive in my own care. I have quit smoking, changed my diet and done things to reduce stress. I take as few meds as possible and research anything thoroughly before agreeing to it. I don't know how much it's helping my MS, but I am not overweight, out of breath, and stressed out, so it's surely not hurting.
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    Shero61  Feb 21, 2014 1:29 PM
    Highly recommend "Multiple Sclerosis for Dummies" by Rosalind Kalb. Excellent "primer" on all things multiple sclerosis. Discusses all aspects of living with the disease, including therapies available, exercise recommendations, alternative therapy, resources, etc. I think everyone diagnosed with MS should receive this as a free copy from their neurologist upon diagnosis. Takes all of the guesswork out of coping with MS.
  • allison  Feb 21, 2014 1:29 PM
    I too have been diagnosed with RRMS in 2012 (mine in Oct). I found a great neurologist who is very patient and will answer all my questions. Last appointment I showed up with 20 questions and he took the time to answer all of them. Keep ahead with new therapies coming down the pike for MS to discuss with your doctor including drugs and the interactions. You are on your way, I'm currently learning Spanish and Tai Chi.
  • taylorl  Feb 21, 2014 2:04 PM
    I feel exactly the same way you do. I am on the journey, too. We can only do what we can do. There are those who would say do this or that, but what works for one does not mean that it works for everyone. I try not to have sugar, gluten, salt (the new no-no,) meat,and milk products, but I do not beat myself up if I occasionally take in some of the taboo products.
  • Anybeth   Feb 21, 2014 2:24 PM
    Unfortunately, it's easy to find bad information on MS, too. When I first started looking about it 5-10 years ago, online it seemed likely as not, any random MS site would be rife with quackery and the situation was even worse at the book store or library. It wouldn't take me long to find dozens of supposed "cures" for MS, some of them quite dangerous. Not to mention people around telling you this thing they *know* worked for their second cousin's MIL or something. It can be hard to navigate to good info when bad info is so common.

    Fortunately for me, a few years after diagnosis, I got to see one of the best neurologists in the country for MS. He's good at finding what medicines will help me with the worst symptoms that meds can help (in addition to taking care of the disease-modifying one).

    What Celeste says is true, it's important to make sure your meds are being ok for you, that they aren't contraindicated for you, that some of your trouble isn't side-effects, and that your meds aren't interacting badly with each other. I got weird side-effects from meds years before diagnosis, so I usually looked up about adverse effects anyway, knowing that these lists are only of things that are possible, not necessarily likely. I've become even more committed to checking these things out since I found out an antibiotic I was prescribed (metronidazole) is contraindicated for people with CNS disease because it can cause brain lesions! What I'd thought was an exacerbation was my antibiotic! Now I ask about certain contraindications (like that one) when I get a prescription.

    Medicines aside, sometimes it's hard because there's no standard way to deal with some symptoms. Sometimes it's just figuring out what works for you. Like, playing with a balloon and doing a ball bearing puzzle help me with large and small movement. I have more trouble acting than I do reacting, and it's less frustrating if I make a mistake at something that isn't important in itself. I commonly have problems with choice, especially when all options are equal. It can make picking a meal impossible. So I made myself an Excel file that will choose for me so long as I make all the options start with a different character. And there are sites and apps that will choose randomly, too. Extremely helpful, but no neuro that knew I have trouble making decisions when options are equal suggested I might use technology to pick for me. Sometimes you gotta find things out yourself. Explore, I guess.
  • ellenm  Feb 21, 2014 3:10 PM
    Lauren, my best advice for you and other "victims" of MS is to exercise daily for 15-20 minutes if possible. Simply standing and moving my legs back and forth or up and down helps keep me somewhat limber and eases my depression. After decades of frustrating doctor visits and finally an MS diagnosis only six years ago, choosing to exercise is about the only choice I can still make for myself! Good luck.
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    Bobo  Feb 21, 2014 3:35 PM
    Thanks for all the suggestions above. We need to do our own reading of trusted sites, and avoid the quackery online re MS. There is no cure yet, but they are working towards it every day.
    DMT is up to you-neurologists can guide us to what may suit us, but the ultimate decision was mine. Liking to control, that was good for me. I'm fighting back every time I give myself a shot.
    Moderation in everything is what works for my brand of MS: rest enough, eat a balanced range of food, exercise enough, visit with friends enough, volunteer enough, etc. Listen to what others say, but in the end the choice is yours. Follow it or not, do what feel right for you. Cheers.
  • Nancy   Feb 21, 2014 4:23 PM
    I was diagnosed with RRMS in 1979. Stopped working in 1997. Can't remember how many years I've been on Betaseron. Love the drug. Hate the injections. Investigating Tecfidera. Hopefully I can move on to tablets and the side effects will be mild. I do exercise, travel with my husband (and my wheelchair) to Ireland several times a year. Much has been done with research on MS and I hope there will be a cure on our lifetimes. The key is to keep a positive attitude.
  • 2100Fran  Feb 21, 2014 10:31 PM
    Information is the key. Read everything you can get your hands on, use your computer, go to the library, work with legit MS associations, join a local support group. These are the things that best helped me. Not a rookie. 20+ year veteran.....
  • Monica   Feb 21, 2014 11:25 PM
    I was wondering has anyone been on LYRICA my doctor just put me on it due to a flare up. Not sure if it is working the best for me I feel as if I am getting worse before I am getting better.
  • Sue Chapman   Feb 22, 2014 12:12 AM
    Thank goodness I feel just like this I have been at home from work for three months following a relapse and no one seems to be telling me what to do to get better Should I return to work should I stay at home Yes they have given me extra meds but do I take these forever or do I start to reduce them now I am starting to feel better Please we all need help and advice not left in this lonely place with no one along side to help
  • Brenda14  Feb 22, 2014 5:45 PM
    Sue, it is up to you if you can go back to work. No one else knows that. Can you take a full work day without rest, or a nap? If you aren't happy
    with your drs, then change. It took me 10 years to find a great dr who cares. And be sure to take your meds, shots, and all. That's the only way you stay as well as you are. Good luck, Brenda
  • Avatar
    Brown-Poodle  Feb 23, 2014 12:01 PM
    My son wanted a book that he could read to keep him self informed even though he has had MS for 12 years.
    So I bought him MS for Dummies and Managing the Symptoms of MS by Dr Randall T Schapuro.
    Of the 2 books he felt that Managing the Symptoms of MS was a excellent book to help him know what to expect in the future.
    Everyone is right you need to be your own advocate.
    The best advice I can give anyone is keep informed of ALL side effects of all drugs you are on.
    I know not a easy fet but it may save you and your family many heart aches.
    The other thing is tell your family to keep a eye on you for any unusual behaviors when on a new drug. It also may keep you from any more heart ache then you already have.
    The last thing is pray for a cure. It may not come in our generation but they will someday find one.
  • Kathleen Aquilino   Mar 9, 2014 10:08 AM
    After 40+ years with MS I'm still walking. I connected by writing a book: Muddling Through MS. All info at muddlingthroughms.com
  • Beth Ann   Mar 23, 2014 6:50 AM
    Knowing your body and doing research is key. It took 10 years for my doctors to diagnose me with MS and it was actually my physical therapist who took me directly to my ortho. during one of my p.t. sessions and told him send her to a neurologist I have seen her for too many things over the years I think it is MS.
    With in two weeks I was positively diagnosed and handed a book to read by by three different people. None of which knew each other. The book was the Gold Coast Cure. I use it as my Bible it is a great book about life style change and eating habits for people with many diseases especially MS. I recommend it to everyone. It has helped me keep symptoms to a minimum.
  • Avatar
    BeachBound  May 20, 2014 2:14 PM
    I have been living with MS for 16 years. When I was first diagnosed I was completely lost and felt like my doctors didn't have a clue. I have always chosen the "no meds" route. I have also worked really hard on my diet and this has felt right for me and my situation. I think you have to truly listen to yourself and that little voice inside you to help navigate your way through this. You are the only one who will know what is best for you. :-)