By Doing Nothing, I Am Doing Something…

Diana’s my guest blogger today. She writes a brilliant blog Β – – about everything from Candy Crush to Breaking Bad. She has MS, and for Diana, it stands for ‘mucho special’. I’m pretty chuffed that we’re going to meet up next year when me and The Teenager go to New York…

I was diagnosed with RSRM Multiple Sclerosis on January 20, 2012. Since then I’ve been to five doctors and called two my own.

Every doctor I’ve seen has highly recommend I take medication. I briefly took Copaxone when I was newly diagnosed but after too many faux panic attacks, which are apparently normal, I decided I would rather handle my treatment organically. AKA no medicine, no side effects.

Of course I know that I should at least have a primary neurologist and so I continued on my quest to find a doctor I like. And then I did. She was affiliated with a hospital with a noted MS center. I’m not sure what I was expecting but I walked in knowing that I wasn’t going to be taking medication but hoping she’d still want me as her patient. Of course she agreed with every doctor before her – I should take medication. But I liked and trusted her so much that I promised her I’d that I would consider taking medicine if my MRI showed I had new lesions.

I was certain I wouldn’t have new lesions on account that I’ve been feeling pretty good. Diet and exercise, in addition to acupuncture and reducing stress have allowed me to live normally and with minimal interruption. Sure, sometimes I feel like it’s raining on my skin, my balance is lackluster at best and brain fog is a companion but it really isn’t that bad. I can and will survive.

But of course I was wrong about the lesions. My new MRI results showed three new enhanced lesions. During our follow up appointment in which I was supposed to pick the medication (I promised) I barter with the doctor. Again. And again she explains to me that just because I don’t feel symptoms doesn’t mean new lesions aren’t forming. As we speak, even.

My options are Gilenya and Tecfedera. I have to either fear heart attacks or JC virus. In fact, Tecfedera hasn’t even been on the market long enough for us to really know the side effects. What if I start growing fins? Or worse, I become the one patient who gets a brain infection. And trust me, I know it’s not that simple. I know that science is smarter than I am. But I also know that when you try to fix one thing in your body, there is a risk of another thing will get sick. Treat MS, say goodbye to your autoimmunity. Or say hello to thyroid issues. Or so many other issues.

I have yet to schedule an appointment to actually start any medicine. I’m too scared. Maybe it’s irrational but I can’t help but to think that with my luck, I will develop a new disorder that will require more medicine.

I suppose by doing nothing I am doing something. By not scheduling that followup appointment with my neurologist, I am making a choice not to take the medicine. I suppose I am taking risk either way. Thanks, MS. Thanks a lot.

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45 thoughts on “By Doing Nothing, I Am Doing Something…

  1. Chris says:

    Snap similar story over 20 years and it all quests trails and more you choice I chose to live cope etc after thinking the first three drug I took that made me feel horrible !!! So
    I am vegi healthy 3 kids and lots and lots more new lesions yes the cause pain put me to bed but
    I am still here, slower older but fighting my own. Fight staying positive , wearing flats and falling over , but no side effects from drugs etc my choice my family’s choice and we will just have to wait and see x

    • stumbling in flats says:

      That’s a really interesting comment. I guess looking back, I kind of rushed into choosing a drug. Only because my life was unbearable and it was so hard to keep going.
      Thankfully it’s worked but not without side effects. Really informative to hear from people who choose not to take DMD’s.
      Thank you!

  2. Julie says:

    I feel uncomfortable injecting Copaxone daily, and that’s not just about the site problems. I am not one for taking any medication unless I absolutely have to but I am not clued up enough about ms to refuse treatment. So, at the moment I take it.
    Having said that I have a book written by a brain doctor who has ppms and has improved her health enormously by giving her brain the nutrients it needs to be able to function in the best way it can. Her name is Dr Wahls and she is an inspiration, going from a wheelchair to cycling 18 miles!
    I don’t know if following her diet will have the same effect on me but it certainly won’t hurt to try, and I have lost 9lb so it won’t be fruitless anyway.
    I think that given my limited knowledge I have a fair balance of drugs and healthy nutrition for now.

    • stumbling in flats says:

      I find it hard to comment as I know next to nothing about Copaxone, hence Diana’s blog post. Mind you, my eyes lit up when I saw you lost 9lb on Dr Wahl’s diet – must research!!!
      I guess we’ve all got different ways we come to decisions. I know a lot of people who don’t take DMD’s and a lot of people who do, all for very different reasons. Tricky.

    • Hey. Thanks for reading my post!

      Diet makes a huge difference! It won’t cure you by doctors standards but I think going from wheelchair to walking is a significant step.

      • stumbling in flats says:

        Thank you so much for writing it!
        It’s great to have a post that sparks debate – always good to see different viewpoints. Funnily enough, there is an interesting article in the MS Society magazine that came in the post today. A woman who has refused any standard MS treatment over the last couple of decades and she’s doing just fine.
        The debate rumbles on…

        • You’re welcome, of course! And thanks for hosting me. πŸ™‚ Interesting about the article. Can you send me a link to this?

          • stumbling in flats says:

            It’s been so informative!!
            I’ve looked everywhere for a link to the article. I have the magazine in front of me and my scanner’s not working. Arggghhh! Don’t think they’ve uploaded a pdf form to the internet – but wait a few weeks and have google MS Matters Cymru September – October 2013. The article’s on page 5, by a woman called Kate Cook. Hope this helps!
            p.s. thank you so much again for writing such a great post

  3. I wouldn’t call that making a choice to take or not to take medication, I would call that avoiding the issue by not making the appointment to tell the neurologist either way. yes there are people with MS that do perfectly fine and do not take any meds, the usual change of diet, exercise etc…, but there are some people who do not and no matter what they change, they need to take meds.

    I don’t want to be part of the doom and gloom crowd, but they way I look at it is, yes having to take meds that can have horrible side effects is not a good thing, (and if they do have bad side effects, obviously not worth taking, switch to something else), but if the meds help cut down on lesions, why not take something? less lesions, possibly better life? A person might feel fine, but it doesnt mean lesions are not forming, and the meds can help with that.

    I hate looking like I have been shot with a paintball gun in the stomach, but when I see and feel the results, I’m glad I take the injections. Its a choice to take meds, but even after doing the research on many different kinds, and reading about possible side effects, I would still take meds for my MS. I am not going to just “deal with it” or let the disease run its course, I am going to try to control it they ways I can.

    Its trying to be knowledgeable about what you can take and realizing the side effects in a lot of cases, are pretty rare, (and either will go away are or treated themselves pretty simply).

    This disease is all “what ifs”. What if I end up in a chair? what if I get such and such from the meds? What if…? Life is too damned short to think about the “what ifs” and for me at least, taking meds gives me a bit more time to enjoy life as full as I can.

    • stumbling in flats says:

      Great points Jennifer. I think for me, the risks were worth it – the main thing my drug does is slow down relapse rate and therefore disease progression. The way I was going, I was heading for major disability pretty rapidly.
      Also, on an emotional note, the fact that there are over 20 DMD’s to choose from when my dad had no choice back in the 70’s really swung it for me. My main priority is to bring up my son to the best of my abilities and it was getting to the stage where I simply couldn’t. Alemtuzumab has changed my life, but I’m sure Tysabri would have done just as well. I would only have found it hard to commit to a monthly infusion so I thought it would be easier to opt for Alemtuzumab.
      I also think there is a test to see if you’re susceptible to the JC virus? But I might be wrong?
      On the other hand, I would always support someone if they chose nothing at all. We’re all different and MS is different for all of us. DMD’s always seems to bring up a lively debate! More opinions would be great?

      • I agree completely that it is an individuals choice on whether or not to take DMDs, but I think it should be a choice made with as much knowledge as they can get about the topic

        There is a test, but sometimes it can show a false positive or a false negative.

        Even when I was a kid in the 80’s, when people talked about MS, it was always doom and gloom, at least now we do have options either way.

        • stumbling in flats says:

          You’ve absolutely hit the nail on the head there – twice!
          First, we’re really lucky to actually have the option whether or not to take DMD’s. Not like in the bad old days.
          And also, I agree, we should make informed decisions. Definitely. Ask your neuro, put out questions on forums, blogs, Twitter. I think there’s also a great MS DMD decisions website, but for the life of me I can’t remember the web address. (head’s full of useless exam facts, lol). If anyone knows, please tell us!!

        • I did get tested and was positive. But maybe it’s worth it to test again to confirm.

    • Hey. Thanks for reading and commenting on my post!

      Yes, I suppose you’re right in a way – I do avoid the issue. Like all of us, sometimes I just wish it wasn’t true. And when I feel good, I convince myself that I’m fine. The bottom line is that I’m just scared. Even if it’s irrational, I can’t help it. But here is what I always wonder – if a person does well without medicine their entire life, what difference does it make if they have lesions if it doesn’t affect their daily lives?

      • its not irrational at all!! its a completely normal thing when dealing with MS

        Lesion are like a time bomb, might be fine for awhile, but they might build up or effect things bit by bit. so while some people are fine without meds, others do need to take something to slow down the progression. After seeing so many doctors, and them all saying the same things, i would be doing a lot of research about medication. (but thats me)

        symptoms can build up so slowly that sometimes a persons ends up thinking its normal, when its not :/

        • Funny you should say that because I have adjusted to some symptoms and now it’s just a part of me. Like my bad balance! And my foot pain which requires lots of massages. Your comment, and everyone else who takes medicine, has inspired me to look into it again.

          • Having MS is all about adjusting to things so you can live as normal a life as possible.

            just read as much as you can about it, and talk to as many people that you can, but in the end form your own decision about taking meds or not, and look into other things that might work for you feet in case the massages stop helping. might find something that works better, and I don’t just mean medication.

  4. Sally says:

    Have to add I for one am so glad that we now have a large range of medical options to help us keep our ‘normal’ lives going as long as possible. Before starting copaxone in 2005 I had had 2 relapses in the space of one year. The next relapse was not until 2010. One of my lesions had disappeared and there were no new ones. I entirely put that down to my dmd use. Had another relapse in April this year and I find walking for any considerable distance difficult, but I have had no new symptoms for about 15 years. I realise my only major problem is my legs. Everything else is ‘relatively’ minor. Nothing a stiff gin n tonic, anti histamine or couple of nurofen doesn’t help. When presented with the option of something that could prolong my independence and ease the fear of a gloomy future , I found that it wasn’t really an option. Have now also been taking Fampridine for 6 months ( makes me feel bit woozy first thing in the morning but it passes) and I have now regained a certain level of strength again in my legs. I used to work in pharmaceutical r &d and was used to hearing people complain about greedy, selfish pharma companies but if people realised quite how many years and how much money it takes for one product to come to market they might not be so anti medication. I am happy to take the advice of my trusted neurologist that anything he might suggest is genuinely in my best long term interest..

    • stumbling in flats says:

      I think my story is pretty similar to yours – I was having relapse after relapse after relapse and steadily getting worse. Perhaps if my MS picture hadn’t been quite so extreme, I could have had some breathing space to hang fire with the DMDs a while. My health was rapidly sliding downhill and I could barely function most days.
      After Alemtuzumab, I’ve still got the same problems, just no relapses. So some days I still spend entirely at home with no energy. Others, I can get through easier. Seem to be having a pretty bad time at the moment but hopefully it’ll pass. Exam stress probably.
      And luckily my neuro is fabulous, but I have heard horror stories from other people who have been given no guidance from their neuros at all. Plus, MS nurses are invaluable. We need more of them!!

    • Hi Sally. Thanks for reading my post. I can’t lie – I have thought that of pharmaceutical companies but I also have a great respect for the science behind the medicine. It’s simply amazing what these medications could do and I’m happy you feel better. My take is that some of the medicines haven’t been around long enough to determine the longterm side effects and that just makes me uncomfortable. This is how I feel today but I do think about it every day and who knows what the future will bring. I have had 1 relapse since I was diagnosed.

    • Hi Sally. Thanks for reading my post. I can’t lie – I have thought that of pharmaceutical companies but I also have a great respect for the science behind the medicine. It’s simply amazing what these medications could do and I’m happy you feel better. My take is that some of the medicines haven’t been around long enough to determine the longterm side effects and that just makes me uncomfortable. This is how I feel today but I do think about it every day and who knows what the future will bring. I have had 1 relapse since I was diagnosed.

      • Sally says:

        Diana, I get that you are scared. We all hit periods with ms when we think. WHY ME! If you end up being one of the lucky ones your ms may not develop for many years but the chances are you may get worse eventually. You sound, at the moment like its not urgent to start medication so take your time and read as much info as you can on all the drugs. The Internet is wonderful for that. On the plus side a lot of the current dmd s have actually been around longer than you think and actually have quite good safety profiles. Even some of the newer ones have been around for a while but investigated for other diseases, so they too have some level of safety profile. I was diagnosed in 1994 (my first symptom was 1992, optic neuritis and my medical notes even stated from then suspected ms but nobody told me). Starts dmd 2005 after really bad relapse and really believe they have kept me as healthy as I still am. Go and talk it over with your neurologist again. Keep positive too, always helps.

  5. Interesting post! Like SIF, I felt kind of rushed into choosing an injectable drug when I was diagnosed. I was too bewildered/scared/sad/freaked out to even question IF I was going to take something. The neurologist (very kindly) said: “These drugs are your options; based on your MRI & the number and size of your lesions, I’d suggest this one.” (It was Rebif, for anyone wondering.) So pretty much from Day 1 I have been on injections. I had a terrible relapse about a year and a half ago, and blood tests and more MRIs revealed Rebif was no longer working. Apparently, you can develop antibodies to it. Hope I’ve gotten that bit right. So my neurologist switched me to Copaxone. Again, it wasn’t a “do you WANT to try something else?” it was a “here’s what you should try next” conversation. So far, so good. I’ve been relapse free since being on Copaxone. My MRIs have been good, although I’m scheduled for one soon, so we’ll see. Yes, giving shots sucks, but I genuinely believe they are helping. Oh – and someone mentioned Dr. Wahls. Her story is very inspiring. I’m on the Swank Diet (yay!); it’s similar to the diet Dr. Wahls recommends. It’s a very healthy way of eating, so even if it doesn’t do a thing for my MS, at the very least it might help prevent other diet-related maladies.

    • stumbling in flats says:

      Thanks CrankyPants! Grrr, I really, really should try Dr Wahl’s diet or the Swank one. Really. But can I wait til after Christmas??
      I haven’t had an MRI since last March and to be honest, I don’t want one. Claustrophobia and a fear of how many more lesions have developed. Definitely a coward.
      Good to hear your story. This post has been so interesting!

      • Can you get one of those more open-type MRIs? They have them here, but my neuro said I can’t unless I’m a gen-u-wine claustrophobic because the results aren’t as accurate.

        Ordering you a copy of the Swank Diet cookbook for Christmas! meh. πŸ™‚

        • stumbling in flats says:

          They don’t have them at my hospital, meh. I must get a tranquiliser next time. I was an absolute wreck.
          Must swot up on Swank stuff! Otherwise I’ll be giving the blimp a run for his money…

          • I was in such a hurry to get out of the stupid machine, I got up too fast and the nurse had to catch me before I passed out :p

          • stumbling in flats says:

            That sounds like me!! I was trying to put my mind anywhere but the machine. It was horrendous πŸ™

          • This is reminding me: my last MRI was IMMEDIATELY AFTER AN EARTHQUAKE. I still can’t believe I actually let myself get crammed into a tube with the threat of aftershocks still quite real. Lord! Maybe I took something to relax me too…it’s the only explanation πŸ™‚

          • stumbling in flats says:

            That’s crazy!!
            They told me to keep my eyes open and look at the mirror above me. Um, like, no way. My eyes were squeezed shut the entire time and I hummed along to some inane tune in my head.
            If I have to go back in to one of them again, I will be kicking and screaming. Why can’t they just put us to sleep and then do it?!

          • diazepam is your friend :p as long you are not driving :p

          • stumbling in flats says:

            Duly noted and logged in my hospital notebook, thanks!!

    • I’m glad copaxone works for you! If my neurologist told me I should try something, I’d ask why. From what I recall, Copaxone reduces relapses by 30% but I can be wrong about that. But again, if it’s working for you, that’s great!

  6. I feel the meds have saved my life since 1994, before then the MS was getting horrible with nurses etc. We are all so different though and each does the best they can to decide what to take or not.
    Yall have had a good discussion here about it

  7. […] out my guest post on Stumbling in Flats. I talk about why I’m not taking disease modifying drugs and it’s quite the […]

  8. Howard Pinney says:

    I read with interest your article in the Western Mail today Saturday 17 February 2018. I was diagnosed with M&S in 1987 after suffering for 8 years with a suspected pinched nerve.
    In 1996 I was successful with my DLA claim and was told it would be for life. Higher rate for mobility lower rate for care.
    I was employed full time right up to 2010 when my MS escalated and I was successful in getting high for care but my claim was labelled indefinite.
    This January I was assessed at home by Capita the outcome being I was categorised as standard for both care and mobility. This meant my car had to go back and my income was greatly affected.
    I appealed against this decision and successfully had my mobility claim increased to high. Since then I have become worse.
    What I do not understand is why when MS is a dilibitating illness the people who assess you do not realise that this is the best I will ever be and future assessment will show a reduction in my capabilities. The stress I was under completing the forms and in the face to face assessment only aggrevated my condition.
    Rant over but I wish somebody would look into our needs when asking us to undertake further assessments. Why do these people not talk to the professionals, consultants, doctors and specialist nurses instead of those who are suffering.

    • stumbling in flats says:

      Thank you so much for your comment and I’m so sorry to hear what you have been through. It’s truly shocking.
      I have been so stressed since the letter about moving from DLA to PIP arrived in October. It’s been a dreadful time, only made worse by a horrible face to face assessment last week. I can only hope the assessor was having a good day, otherwise I’ll be gearing up for a tribunal, which will be even more stressful!

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