Saying the Big No: Decision and the Informed Patient
RATE

As an MS forum community leader, I’m always there to dole out advice whenever a new patient is stressed beyond endurance.  She posts a desperate and harried rant about how painful the shots are, how awful the side effects of her symptom meds have been, or how terrified she is of that loud, claustrophobic MRI tube. She wants to chuck the whole enchilada and hide out in her bedroom. Take heart, I tell her, there are things you can do to be more comfortable. For painful shots, try icing or heat beforehand. And if your symptom meds aren’t working or they’ve turned you into a werewolf, call your doctor for a dose adjustment or an alternative medication. (They won’t give you a silver bullet, though, I’ve asked.) Afraid of MRI tubes? Knock yourself out with Ativan before embarking on that journey into the doughnut hole. Though such suggestions roll glibly off my keyboard, I sometimes struggle to take my own advice and must privately beg a friend to talk me down from the ledge. Once in a while, being rational just doesn’t cut it anymore. I have to take a break from being a grown-up and curl up in the fetal position.

Given such regressions, it remains easy for me to understand the new patient’s frustration with an unfamiliar medical world. Doctors just cannot or will not give us the footnotes, disclaimers, addenda, and glossaries of disease management when they hand us our MS graduation certificates. We must learn the language of our disease from other patients. Dialogue with experienced mentors earns us advanced knowledge of MS pharmacology, CNS imaging, and alternative therapies. The payoff reveals itself the day that helpless voice inside us drops to a whisper. We discover our power in small epiphanies. We question each new symptom med, say a tentative little yes, try it out, and squeak out a little no after a while if things just don’t feel right. One would think it gets easier with practice, pronouncing our yeas and nays, but it’s as laborious as walking on spastic legs, feeling as though we are slogging through wet concrete.

To disease education we should say yes. To the notion of asserting ourselves with our specialists, counter-intuitive as it might feel, we should say yes. And early in our RRMS disease journey, we really ought to say yes to one of the available disease-modifying drugs as soon as possible. Say yes because we are still learning, because this is a disease that has to be experienced to be known and the same goes for its treatments.

With more learning we discover the myriad gray areas in the world of Multiple Sclerosis. We read clinical study abstracts and actually sort of understand them. We learn that side effects lists are really a hodge-podge of hangnails, coughs, rashes, headaches, twinges, infections, and organ failures that study subjects are required to report during clinical trials, but which might not be related to the trial drug at all. We learn the limitations of our 1.5T and 3T MRI machines. We are flooded with light-bulb-above-the-head moments, one being the second we realize our neurologist is just a member of our little consulting team, not the guy who brought the stone tablets down from the mountain. We get smart and we get skeptical. Cocky, even. We might stand tall at a podium and tell the professionals to kill the fatted calf and party hard at our coronation festival because we’re taking over our disease management. It’s good to be the king. A king can say no. A wise king can say no with the confidence of having made an informed decision. And not just a little no. The big no.

I uttered the big no in 2011 when I discontinued Tysabri and decided not to take any disease-modifying drugs to replace it. I’ve been riding bareback, if you will, ever since. Although I didn’t think so at the time, this was a significant decision. Just five years ago, when I was starting out as an advice-giver, if a patient had said she was planning to do this I’d have done my best to talk her out of it. At the time it would have sounded reckless and impulsive to me. But not now. There was, after all, a heck of a lot of context behind my decision.

We humans like to look for patterns, it’s how we keep our sanity in the wake of all the random stimuli that assault our senses. And though we know MS is unpredictable, we come to know our own flare patterns, or what we perceive to be patterns. My pattern seems to be one flare every five years or so. Now, that might sound peachy as far as active disease goes, but it makes determining whether my DMD is doing its job nigh onto impossible. Sound like the drug is responsible? Let me explain.

After my first flare, I was given no diagnosis and therefore took no DMD. I didn’t flare again for five years. After that, I took Copaxone for the next five years—and flared again in year five. I monkeyed around with Rebif and Tysabri for a year and then chucked it, almost the whole enchilada (I do still take symptom meds). I won’t elaborate on all the complexities of taking these drugs; suffice it to say that those experiences heavily informed my ultimate decision as well. It all added up to a light bulb moment: I became convinced that DMD or no DMD, I’m going to flare once every five years. So the next flare might, by my reasoning, occur sometime in 2014 no matter what.

I didn’t hide in my bedroom, didn’t curl up with my blankie. My neuro is biting her nails, though; she’s worried about the enchilada-chucking. Except for one thing. I also informed her that I will cease having any further MRIs. They are a tool for tracking our lesion loads, and mine remained boringly stagnant even after a long and disabling flare. Light bulb moment: Lesion load does not necessarily correspond to the degree of disability. Light bulb moment: Commercial strength MRIs can’t reveal everything that is happening in the gray and white matter. And besides, my Medicare coinsurance for an MRI is hundreds of dollars, and my SSDI check is being gnawed bloody by medical debt as it is. To all of this reasoning my neuro nodded in agreement.

But I did make my neuro one promise: That I would consider taking Tecfidera this year. I’ll be seeing her this month. I’m not sure what I will decide, but either way, I have few worries.

It’s good to be the king.

advertisement
SubscribeJoin 51,000 subscribers to our weekly newsletter.

Your username will be visible to others.


Leave a Reply

35 comments on “Saying the Big No: Decision and the Informed Patient

  1. The doctor, who I had never met before, walks in and says I have MS, then hands me 5 scrips. I say “I would really like to research the medications you are recommending before taking them.” He said “well, clearly you need Prozac too.” I attempted to explain I had been overmedicated beforehand. He walked out mid-sentence. His nurse said I would need to get another referral, as he would not treat a “non-compliant” patient.

    Eight more months until I got another neuro appt. (Thanks Obama care!)

    In the interim, I decided I wasn’t going to take meds. The side-effects and risks were not worth potential side effects. I decided to try the natural route. Miraculous? No. Definite improvements.

    Of course the docs say it is completely unrelated. Is it for everyone? No. I am not against medication, but I think we are all so accustomed to a quick fix, pill solution – doctors AND patients.

    I was obese and depressed in my 20s. Not once did a doctor suggest getting active, only recommending pill for curbing appetite and anti-depressants. I have always been willing to “do the work” that has payoffs. I have “fired” a lot of docs along the way who did not view the care over MY body as a partnership. I value their knowledge, insight, and recommendations, but it is ultimately my choice. If they cannot handle that, or educate me on the options, they are not the doctor for me.

    And, I have found the less I interact with doctors, the healthier I am. 😉

  2. MargaretF says:

    My thanks to Kim for sharing her journey through DMD choices, and then away from the whole thing. For those of us diagnosed before there were any Disease Modifying Drugs (DMD’s) perhaps those decisions are a bit easier.

    I had years and years to first be terrified and then get over it. I educated myself about MS and was blessed with a Country Doc (family practice) who advised me, when DMD’s first came out: “Wait. There are more and better treatments coming and you are doing okay so far” So I took his advice and have no regrets about that,

    Now, at age 65, I am starting Gilenya. Why? Because my RRMS has turned into a new beast of prey, likely Secondary Progressive, that goes unnamed because Gilenya is for RRMS.
    My MRI, the first since 1987, showed one lesion lighting up my brain, active again after all these years. I think it has been active on and off over all the years we didn’t observe it by MRI; but in the world of neurology one must react by prescribing DMD’s when confronted with active disease.

    I opted to try a DMD because Secondary Progressive MS does scare me a bit. The business of aging is bad enough, speeding that process by way of MS brain damage is more than I want to think about!

    But younger people, newly diagnosed and frightened about that diagnosis, may be making the decision to use DMD’s under a lot of pressure. My two bits is almost the same advice I got twenty years ago: “It’s okay to wait if you have to, there are more and better treatments coming.”

    Every decision has some risk involved, but we are flying by the seat of our pants and we pray for the best results. We can and do educate ourselves about the risks and benefits of DMD’s but nobody can say how it will affect an individual for good or for ill. We just have to take the best shot and see what happens. And it really is okay to say “NO” – it’s your body and at the end of the day, you have to live with the choices you make (not your doctor).

    I think all of us would just as soon “walk away from it and close the door on it.” I know I would, in a heartbeat! But that is not an option. All we can do is make an educated choice and then do it again and again. My choice in the future may be “palliative care,” because I am older and I want to be comfortable in my later years.

    Your choice is probably different, if you are younger and newer to this game called MS Treatments. I remember vividly promising myself that I would live and stay as able as possible until all my kids turned 18. That was my alternative to suicide or giving up. Then my kids all turned 18 and wow! I had to make new choices because by then I was not ready to just give up. I had learned to live with MS, perfectly adapted to my body with disabilities and all. You do not know what the future holds and please do not second guess it. Go ahead and fly, newcomers, by the seat of your pants if you have to. The future is what it is and you may or may not influence it. All you can do is the best you can do! Happy Trails to You!

  3. Kim Dolce moderator author says:

    Lots of great wisdom and advice there, Margaret, thanks for sharing your thoughts. I hope Gilenya makes a difference for you.

    Kim

  4. vivi says:

    I was having to get repeated MRI’S a lot. I finally spoke to my Primary Care Physician and told him that If I had to live BROKE, that wasn’t living. So after a long discussion he gave me Baclofen for the muscle spasm’s and told me to continue being as active as I could be. The medication has helped some. I continue to walk as much as possible and use the resistance pool as much as I can. I have made up my mind that due to the financial part of all of this is far to overwhelming, I will continue to stay with my diet and the medication but will not continue to have repeated MRI’s and all of the medications that have been offered to me at this point. I think that sometimes the specialist forget how expensive this is and most all of the medications are also very expensive. My body will let me know when I need to do things differently. As for now, I will try to live the best I know how. I am not afraid to say NO.

  5. lhalvor says:

    Sorry, just saw I posted much the same previously. Thanks all for sharing though. It was very
    Only before the Internet!

  6. lhalvor says:

    I’ve been doing this for 40 years. Back when the only drug was ACTH. Treated with at the time a “world renowned doctor.” I stopped after 2 years, 4 ten day IV treatments (all day long not one hour). My dad wanted to know how I could leave that doctor. I said what oes it matter if he’s world renowned for a disease with no known cause, cure or treatment. I was 23 years old. There’s so much more available but not that much has changed. Listen to your body and heart and be strong.

  7. As a relatively new diagnosed patient who has already had to switch medications twice due to relapses and horrible side effects I can relate to this post and to the comments so well! I’m also an MS nurse, working in an MS clinic so I encounter many different patients every day. Some are on meds and doing well, some are off meds and doing well. I myself and going for my Gilenya first dose observation this week after being off of meds for a couple of months.
    This disease is different for everyone, and should be managed that way. Check out my blog post about this topic if you get a chance, I would love to hear what everyone here has to think! http://justkeepsmyelin.com/?p=133

  8. Pooch says:

    Thanks to all who commented and a big thanks to Kim for posting her thoughts and starting the entire process. We all need to remember we are the ones experiencing the disease and our doctors are only suggesting possible alternatives to address our issues. When we encounter doctors who become effronted or even outraged at us (the patient) for not blindly following their advice, we must firmly assert our existence at the head of the chain for our disease. At times, we must move on and find another doctor. The best doctors act as guides and provide several alternatives for patients to pursue. It’s tough to be a guide. Much tougher than acting as a fount of all knowledge. My we all find guides.

  9. Kim Dolce moderator author says:

    Well said, Pooch. Thanks for sharing your thoughts.

  10. lhalvor says:

    I applaud you. It takes courage to make such choices. I’m an old timer with this illness having been diagnosed in 1976 fresh out of college with a degree I couldn’t use. No DMD’s, the Catscan was 2 hours away, no MRI’s and only steroids as the drug of choice. I initially treated with a “world-renowned” Dr until I experienced hallucinations from the amount of steroids I was prescribed. My dad was upset that I left this Dr. My comment was, “What does it matter if it’s a world renowned dr or a local yokel for a disease with no known cause, cure or treatment.” While there are more options now than ever, it is still much the same. Thank you for sharing.

  11. vivi says:

    The steroids I was on were having a definite impact on my weight and my breathing. My bone density test was horrible. I chose to stop taking them. I am not waiting for a knee replacement. I have already had my elbow surgery. I continue to have regular Dental check-ups due to the affects of the steroids on them as well as eye exams. I will only take the steroids on a short term bases and a much milder dose. Good luck to you.

  12. Hi Kim,
    I am Really Pleased to be able to Talk to Someone that is Normal. I also have been on Every & I Mean Every Medicine that has been Available, even The 3 Oral Pills, I have had MS for 23 years. I just turned the Big 50, Now that’s a Very Hard 1 To Admit To!! Anyways, I started w/ Beta Seron ,Avonex,Rebut,Tysabri & do forth. Yeah, all of The Medicines, throughout the years. I even went in Studies for Tysabri with some of the ingredients out of the Medication. My Body is Rejecting-All of the many Medicines Available. My MS, has moved into the progressive stage, but you know something Kim, I don’t want any Boo Hood’s for me I think of The Young Ones that are getting this disease, I just read of a Seven Year Old Girl, just being diagnosed with This Disease, How Aweful is that. Just a baby. Personally, I fight this Disease with all my might. My Gramps, use to tell me at a young age, God gave all of Us 2 Feet to Stand On & To Always Stand Tall&Strong & To Always Fight Your Battle(whether it was, with a boyfriend or girlfriend,your Best friend or if you get sick). So, I Fight the Fight Every Second,Minute,Hour,Day,Week Month&Years. I Never Give In!! That’s how I deal with it all ( I think to myself & Remember The Wisdom. My Dear Gramps Said&Taught me ). I was Dealt this Hand of Cards, NOT BY CHOICE- But I was Dealt these Cards & I Firmly Believe, that we All were Given This Sneaky Snake Disease– Because, We All Can Handle It. Believe me– it has not by any means been, Peaches&Cream for me. I have had My Hard Days , but I fight that fight & Will Continue To. Thank You for listening, christinelee

  13. DianeD says:

    Hi Kim, new here. I’ve had the dx of MS for 19yrs and I’m going to be 69 in a few days, so I’m old as to dx date. I didn’t start out with an MS drug (Avonex) was the original drug of choice when I was dx’d.

    Three years ago a sense of obligation descended upon me and I told my neuro ‘okay, I’ll do the injections’. Happy neuro.

    I thought I was doing badly at the time, but looking back it wasn’t all that bad. I say that comparatively.

    Right now I’m feeling muddled over whether to quit. Feeling guilty that I might get worse and be (more of) a burden to my dh.

    I haven’t been true to my once a day injection schedule lately; even went off for a few weeks to see if I’ll feel better. I think I did, but I also have another conundrum. I have an itch in my right foot (sole of foot) which is severe. It isn’t visible in any way, but it is severe enough to keep me from getting much rest. It isn’t the pins and needles’ effect described by most MS patients; it isn’t a rash and not a pain, per se, but I’m struggling.

    This itch ‘could’ be from another cause; maybe a spinal lesion or some other problem. It’s lasted 3 yrs. Some times I feel like I’m going to scream, but don’t want to be carted off to the loony bin. Each doc I see, including the neuro, looks at it as if it were something within the scope of their specialty. I have spent a fortune on home remedies, prescriptions, u name it. Nothing works and boy can I relate to some of the horrible side effects of the drugs that the neuro prescribes.

    Not only does it not help my itch, but the dry mouth, the zombie like symptoms and so on are not helpful.

    Sorry to blather on…. Diane

  14. Livingston says:

    Hi Diane-

    Itching?????!!!!! HORRORS. I got a bad case of poison ivy while on Tecfidera. Tried everything – except steroids – to get rid of it. (The only thing that sort of helped was boiling jewelweed, freezing into ice cubes and rubbing all over.) Finally couldn’t stand the Tecfidera any more. Stopped taking it. And the poison ivy went away — hmm. After 2 months with the damn stuff. Relentless itching.

    I feel for you having something that itches so fiercely for SO long!!! HOPE you find some relief soon!! Maybe jewelweed would help you too?!?! Unfortunately it won’t be out till next spring…. Be better before then!

  15. Edie says:

    Diane, boy do I ever understand that itch in your foot! And I thought I was the only one, but I wouldn’t wish it on anyone else. I feel lucky that mine comes and goes, but while it is there it is worse than any poison ivy I’ve ever had. I am so sorry that you are constantly tortured by it. I also get a sensation, at various spots in my legs, that I have a very large pin stuck in my skin. How can that be when my body is so numb? Ad one more is that the bottom of my left foot is burning as if in a fire. None of these last for more than an hour but I feel like someone is playing very bad practical jokes on my body. I hope you find some relief.

  16. Kimberley13 says:

    Hi Kim,

    Did you receive my message about the dangers of BG-12 before it got pulled?

  17. Joan says:

    My neurologist put me on this new drug ampyra that has 16 side effects that are symptoms I already have to a very large extent but the one side effect that stopped me cold was. ” may cause MS flair”. Why in all the world would I ingest something that would induce an MS “flair”? What was that Doctor thinking? I have 2 knee replacements of course my walking is off but I do it without any aids & darn well if slow. No way!

  18. L. Therriault says:

    I am newishly dx – March 2012. My neuro also had me try Ampyra because my walking has gotten worse so quickly. After a while I realized that I’d been feeling much worse (and was even more uncoordinated) and then it dawned on me this coincided with starting Ampyra. I stopped. I do think for me, it caused a relapse.

    But I seem to be in one long relapse ever since my dx. I really don’t understand my MS yet.

    It seems as though most of us with MS cling to the few certainties we have. So do our doctors.

    Like…I bet you all know the date of your diagnosis, right? And…We know the “type” of MS (we’ve been told) we have.

    I know those things, of course. But lately, I’ve been trying to cling to living in the moment and try to accept (and/or disregard) the unknown.

    I’m taking rxactly what I’ve discussed with my drs. But some of my symptoms cannot be treated. When you start out with everyone thinking you have a brain tumor and an emergency MRI rules that and intercranial bleeding, encephalitis, etc you are so damned relieved. That’s just the start of the rollarcoaster through diagnosis, which leads to another ride – living with MS.

    I like Kim’s thought that, “We discover our power in small epiphanies.”

    One of my small epiphanies while reading this article is this: Rather than feeling powerless, “patient” and stuck, I can choose to try to view myself as the one with the power, THE EXPERT of my MS (since it’s as unique as anyone else’s) and FREE to choose what to do about my illness.

    Hmmmm….a lot of fodder for thought.

    Thanks to Kim for a thought-provoking piece!! Love the blogs here.

  19. Joan says:

    I started with NO real treatment back in 1991. Can’t take anything with beta-blockers I’m asthmatic. Been doing Copaxone since 03 after the chemo thing which like a computer wiped my immune system out and put my body to accepting the newer drugs I’m on now. I was in a chair from 94 – 07 but have now been walking with no aids for 1 yr. It progressed very fast & furious so I had NO control over any bodily function you can name. Now I “look too good”. 🙂

  20. Kim Dolce moderator author says:

    Hi Joan,

    Wow, thanks for telling your story. I’m so happy that you had such a dramatic improvement and can walk without a mobility aid now 🙂

    Kim

  21. Judy P. says:

    I was on Rebif for 13yrs.after moving form Tn to N.Va.I had to find a new Neuro,while looking I had an awful injection site reaction. It took 3mo.of at first daily trips to the wound care clinic,than 3x’s a week.I was taken off Rebif& told not to take it again. I was at a loss,my wound care Dr. gave me the name of a Neuro in my town that she knew.
    I started seeing him when I was healed,me & my 4in.scar ( LOL).
    He understood about being off Rebif,& not being able to use any of the injectable DMD’s. He wanted me on one of the new oral meds,after I looked into all of them I refused. He was SO MAD!!After another CT & MRI he said I was now in SPMS,so I decided to take nothing. That was ayear ago I’m doing fine,except for my mobility is slipping fast,I use a Rollator around the house,& wheelchair when out.
    I feel very calm about my decisions,I have the love & help of my family. I’m 68yrs old a widow I live w/ my daughter & family, my Son & his family are only 18mls from us,my other son is in DC,only 30 mls away.
    After much prayer I’m looking for a new neuro, I have a wonderful peace about what I’ve chosen.

  22. Gabby Wilson says:

    I’m still learning how my MS works. I was diagnosed at 13 and they put me on Avonex. When that didn’t calm my beastly disease I was switched to Rebif. I did well on the rebif but the shots were taking a toll on my arms. So I started researching these new pill forms that were surfacing as the clinical trials were becoming more and more successful and found Tecfidera. Exactly one day after it was FDA approved. I then emailed my neuro, who had been vacationing in some foreign country, and asked if Tecfidera would be a smart thing to try and she preferred not to saying that its similar to rebif. However, since its my body I eventually convinced, if not forces her to switch my treatment to the Tecfidera. And personally, it was the best choice I’ve made so far. I guess in a way it was my own graduation present to myself. I don’t suffer from any symptoms from it. Unfortunately for others on the drug, they deal with some pretty heavy stuff. But I’m only 18 and still have a long way to go, though this site helps a lot.

  23. Cas says:

    Ya for everyone here! We are here and we are strong, taking meds or not, we speak up,and I am so happy to find this space in which to do it! I do hope that we all remain strong as we age, which is why I am taking meds,Gilenya now. I took all the injectables,and they did a number on me,and I am grateful to have found Gilenya.Its been 5 yrs. Many cognitive issues,on disability. I had 2 MRI, This is a progressive disease,to much money to tell me something I already know thank you very much.Stay strong,keep your friends and family in the loop,and when you can’t, you know what I mean….come to a place linke this. We are all hre for each other. Namaste

  24. Mandyrose says:

    I was so happy I came across your blog and all the comments. I was diagnosed in July 1997(RRMS). Looking back, I have had symptoms since 1993. I was on Avonex for ten years and was sick,sick,sick. In 2002, a very severe exacerbation landed me on a week of Solumedrol and a hospital stay. That left me in a lot of pain, sleepless and highly nervous. In 2008, I tried Tysabri for 2 yrs when my neurologist took me off because of PML fears. I tried PT for years on and off (insurance issues). I finally got totally turned off any DMD when I my husband asked for a divorce. On my own again,(I have been for five yrs now). Truly, I wish I had the ten yrs I was on meds back. Had I followed my instincts, I believe I would have done better. At least, I might have enjoyed my life. Now SPMS, it was like getting hit with the diagnosis all over again. I am looking into an in-house rehab to try to regain some strength in my legs. I wish us all well. May a real cure be found soon. I’m sick of the promises of all these toxic drugs.

  25. Sandra Boe says:

    I, too, stopped taking any of the disease-modifying drugs after being on Avonex, Rebif and then Copaxone. My side-effects were awful — my quality of life terrible and then, finally, my reactions to Copaxone increasingly more severe until I collapsed on the bathroom floor and went into shock. The next suggestion was to try Tysabri — with even scarier potential side effects. I was not having relapses. All my MRIs were showing no change. I chose, after nearly 10 years on meds, to go off. Since then I have had three relapses. Two very minor, one that lasted two weeks and only one has caused a slight residual numbness in my left hand, which was already slightly numb from my first attack in 1998. I also was told I could have benign MS from the start as I recovered very quickly the first time around though the attack was quite severe. But my quality of life since I decided enough was enough coping with side effects has improved dramatically. I see a naturopath and a new neurologist who isn’t convinced the new drugs are doing all that much good and who also looked at my drug reaction history and said he’d never have put me on any of the drugs to begin with because he considered me at too high a risk for exactly what happened to me. I feel balanced in my approach to my care. I am a program director of a therapeutic horsemanship program I founded to provide my own therapy as well as to others with special needs and disabilities. My life is better than it was before MS. I have taken decisions to life better, make choices, be pro-active and be a part of helping others do the same. I don’t know how long I’ll continue doing so, but I am not going to worry about it, either. During this last relapse I did not get depressed as I have before — I did start Cymbalta over a year ago and that was one of the better medical choices I’ve made. I feel balanced and in a good place. I will continue to consult with my medical advisors and know that they are there to support me, not tell me what I must do. They trust me to know what is best for me. And I trust them to be on my team.

  26. Allan Miller says:

    SPMS, diagnosed at age 66 (male) only about 8 months ago.

    Alertec and now trying Ampyra (Fampyra in Canada) for symptom management. Psychotherapy as well and exercise 3x/w at a seniors centre.

    I don’t get why you would stop taking a drug, but having tried the Ampyra for only a few weeks I think I can understand why.

    On a personal note (nobody talks about sex and doctors don’t ask about it) they could paint the Ampyra pills blue and sell them online. Dramatic increase in libido, etc. The drug company nurse says she has not heard of this, but will inquire.

    Fatigue…fatigue…fatigue!! Cognitive issues–paying bills, losing credit card in the car, losing track of conversations. Frustrating but can work around it.

    I agree with you that the patient (or “pt” as my paramedic friend says) has to take as much control of and interest in this as possible. But I have told my wife that I don’t want to talk about it for more than about 15-20 min at a time. Don’t want to do the “organ recital” every day.

    Thanks for your story. Enjoyed reading it.

    Three more comments:

    One day at a time! (a woman in the physio centre suggested this. she has had MS for decades).

    Listen, choose, pace. This is mine. LIsten to your body and your mind. You can tell when you are tired or being paranoid. Choose what you want to do and can do each day. And pace yourself so you can accomplish what you want to do.

    And yesterday I read, “Nerves that fire together wire together.” So rehearsing balance and walking and thinking and feeling and all the things we do with our brain and spinal cord improves performance in real life.

    Cheers,

    A
    ~

  27. Daisy Dreams says:

    I feel better now knowing other people have felt the same way. I chucked the DMDs a long time ago. The side effects were worse than the MS. I do have moments where i wish it would just finish me off, because it seems like I am under this big black cloud of destruction. I keep stubbornly pushing on though with the help of meds that treat the symptoms. I am still working, but I wonder for how long. I am lucky to have a Doc close by who has a sister-in-law living with him who has MS. He understands it all.

  28. zenhead says:

    I have often toyed with the idea of stopping all the pills and such, and just letting happen whatever happens. Sort of a let’s-get-this-over-with thing, stop putting off the inevitable and take me right to the worse case. Now, after years of being very stable on my current therapy (Cellcept), I seem to be progressing again, in very subtle ways, and wonder again if maybe it is time to say the big no, and just let this thing follow it’s course. There’s really not much for SPMS anyway, and maybe it’s time to let it go.

  29. jfalasco says:

    I applaud your courage. I was diagnosed this February…and though I only experienced numbness for a few months, the “swiss cheese” MRI was conclusive so I started Avonex and I am relatively careful with my diet. If you read the fine print on any of the DMD’s, it’s obvious that no one knows much about MS and our meds are a gamble. Techfidera was once used to treat couch fabric? Side effects from interferons and others can range from nausea, chills and injection site issues to suicidal depression, liver failure and brain virus…wha!?…no wonder we get depressed. In a world that demands results…we have the “crap shoot” of diseases…and the treatments are no better. My 2nd MRI is tomorrow night. I secretly hope these last 7 months were a bad dream, but no matter the outcome, it’s nice to know “bareback” is still an option I can choose.

  30. chili820 says:

    i really enjoyed this article. just recently diagnosed with ms, i think i’ve probably had it for years and just didn’t realize what was going on. The neurologist gave me a list of meds to consider, after on-line research and much soul searching i decided it wasn’t for me. my neurologist is still wanting me to try something but i just don’t see the benefits. if i was younger i might consider it. i can live with my little zaps and buzzes and numbness, to me it just makes life a little more interesting, you never know what each day will bring. i just listen to my body and go from there.

  31. Pam says:

    Thank you for posting this. I have taken the same DMD’s as you and this summer my Neurologist said I was no longer RRMS, but have moved into SPMS. He wants me to start a low-level chemotherapy treatment Cytoxan/methylprednisolone. The idea is to kill of your immune system.
    I ended up canceling my scheduled start of this therapy because it just doesn’t feel right to me. If you research clinical study abstracts on the treatment, they are all over the map, along with patience testimonies. I am still working and am around a lot of young people (I’m a college professor). I need my immune system; I’m exposed to a lot of germs.
    So, I to am “riding bareback” (except for one symptom med, Ampyra). I’m doing exercises and diet, but no DMD’s. I feel like the wise king saying “no with the confidence of having made an informed decision.” Thanks again for your post.

  32. Kim Dolce moderator author says:

    Hi, Pam, I’m sorry to hear of your progression to SPMS. There are so few options for treating that form of MS. Exercise and diet do keep us on our feet and help us feel better in general, it sounds as though you are taking good care of yourself. I hope you can continue to work for a long time to come.

    Kim

  33. Janice says:

    I am so with you and so happy to hear someone say what I have always felt. I didn’t know anything about MS until I was told I had “benign” MS in 2002. I had optic neuritis in 1991, but MS was never even mentioned. Four years later I lost hearing in one ear and was dizzy for about a month but was told I just had an ear infection. In 2002 my eyes starting jumping and I couldn’t focus and I was very dizzy. That is when I was referred to a neurologist that told me I had benign MS and he didn’t start me on any drug therapy because he said the side effects would be worse than my MS. I guess I was in denial that I had any problem and just continued on with life. I had a heart problem which turned out to be nothing they could find but I remember the tight feeling I had before it would start beating fast. I was started on a beta blocker and celexa for my depression which I didn’t know I had. The beta blocker was wonderful and I am still on the celexa 12 years later. I moved to another little town in another state to help my parents but they left me too soon. In the process of having my eyes checked my vision was showing a large area I couldn’t see which reminded me of optic neuritis
    so I was referred to get an MRI and found out I had glaucoma and also my MS had progressed in 10 years. Every neurologist that I saw at that point only questioned why I hadn’t started any drug therapy and just wanted to start me on something and see me later. At the time I had no insurance so drug therapy wasn’t a choice so I was just ignored. I had to drive an hour in two different directions to see two neurologist that all wanted to start me on a different drug therapy and I didn’t get any help when I said I had depression which is a side effect of both drug therapies.

    Again I just ignored my MS and just kept treating my depression which was getting worse and needed to have my medications adjusted. I have never had any physical problems with MS only cognitive. Depression and just not being able to think straight and forgetting words, etc. After getting disability and medicare so I had insurance that could cover some things I decided to pursue what my MS may be doing.

    Of course it had progressed and mostly in the cognitive areas. My new neurologist said I needed to start on drug therapy but my depression wasn’t a problem. I decided since I could have the expense covered I would give Rebif a try. That was in January and I stopped in June because my depression had gotten so bad I had to stop. Calling my neurologist to tell her only got a phone call back from someone else that I could just come to my next appointment in two months and discuss it with her. She is an hour away so I just let it go. I have felt so much better in so many ways and my depression is getting under control again.

    I am so ready to just stop doing anything about my MS and just treat the symptoms. As my very first neurologist told me the drug therapy would be worse than my MS and I am just going to go with that.

  34. Kim Dolce moderator author says:

    Hi, Janice, I’m glad you’re feeling better and the depression is under control for now. Have you researched the oral therapies? If you are still considering taking a DMD, we have Gilenya, Aubagio, and Tecfidera to choose from. These therapies do not cause the side effects we suffer on the interferons. I hope you continue to do well. Thanks for sharing your story.

    Kim

  35. Mspbfh2 says:

    Janice, your story is similar to mine. I’m trying to figure out the whole benign MS thing, because to me, that implies something not harmful…so why do have have trouble with cognitive issues, difficultly walking and pain?? I gave up on the injectable DMDs when the first one made me suicidal and the next one caused such pain that I cried for half an hour afterward, plus huge inflamed welts so I had trouble finding an injection site. I ask about the orals; one dr told me I had to be in the hospital for three days while they started the med and she wouldn’t do that and another told me the oral meds were only for those not responsive to injectable a, and I wasn’t a candidate. The neuro was so upset with me when I stopped my DMD! That I stopped seeing her! Was going to go without a neuro , but my primary won’t prescribe the tregretrol I take to control the trigimial pain. I now drive at least an hour to see a neuro.

Please read our rules before commenting.
Reader favorites