MS Treatment Decisions Can Cause a ‘Gambler’s Dilemma’

MS Treatment Decisions Can Cause a ‘Gambler’s Dilemma’
One of the toughest decisions facing someone with MS is whether to begin treatment with a disease-modifying therapy (DMT). Equally tough, I think, is deciding which DMT road to travel — because there are three roads that can be followed. One path starts you on a simple, first-level medication. These are generally the treatments that have been around for years, such as Avonex, Betaseron, or Copaxone (the “ABC” meds), or one of the oral medications. The efficacy of these treatments is low to moderate, and if the med isn’t working, you’re moved up the ladder to one considered to be more effective. Another path starts you right away with one of the newer, more effective treatments. These are the monoclonal antibodies Tysabri, Ocrevus, and Lemtrada. The third road begins where the first road started, with the first-level meds. But if you fail the first med, you’re moved to another that’s also on the first level to see if it works better. There’s also the option of doing nothing, which some call “watchful waiting.”

The ‘gambler’s dilemma’

As patients, we depend on our neurologists to help us make the right medication choice. And that’s where the “gambler’s dilemma” comes in. This term is used by Prof. Gavin Giovannoni, a researcher and lecturer who writes the Barts MS Blog, to describe the dilemma faced by a person with MS when deciding which road to follow. “A gambler never goes into a casino to lose money,” Giovannoni writes. “However, the gambler knows that on average he/she will lose money.” An MS patient may think that “they will be the lucky one that will win. Someone with MS is never going to have bad MS, they are always going to be the one that ends up with no problems in the future, therefore, they don’t need more effective treatments. This is wrong.”

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The professor is right. I see this all the time in the social media groups I follow. People whose MS symptoms are minimal think they’ll never get worse. They delay beginning their MS treatment because they don’t “feel” like they have MS. Or, they resist moving to a higher level DMT and “gamble” that they’ll be that lucky one. Looking at things objectively, most of us understand that our MS isn’t going away. Whether the treatment is medicinal or holistic, we need do to something to keep the MS monster at bay. Prof. G, as he calls himself, thinks “the practices of watchful waiting (a British medical tradition) and slow stepwise escalation come at a cost to individuals. …” Guidelines released last spring by the American Academy of Neurology agree. They recommend aggressive treatment when a patient is first diagnosed, while taking a patient’s lifestyle into consideration. I also agree. In the eyes of this patient, waiting to begin treatment with the best medication possible or failing to move to a higher level med if necessary is a foolish gamble. (You’re invited to visit my personal blog at www.themswire.com).

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

30 comments

    • Cynthia King says:

      I’m not sure I understand your comment. If you mean PPMS doesn’t fall into this category, that you go down down down and no medical intervention can change that, I see what you mean. But I think, and this is only based on my experience, if you are symptomatic everyone starts in the same place. When first diagnosed most neurologists try something. When that doesn’t work, they try the next level. Then when that doesn’t work they go to the next class of meds. If you go downhill quickly and symptoms progress regardless of medical intervention, then that PPMS label gets hung on you. But Ocrevus is labeled for use in this patient population, so there is an option if this is where ms takes you. Not to reveal my age, when I was diagnosed it took a long time to even decide if it was ms. It was charted ‘possible ms’,’probable ms,’ ‘and then ‘definite ms’. At least now there is more information available to make an intelligent decision and if you seek treatment you need to find a specialist in ms. That is almost as important as any drugs. A good neurologist is the best place to start. Where you go from there is for the two of you to decide together.

    • Tamara Sellman says:

      My experience: My doctor asked me, “What do you want to do?”
      I asked her, “What are my options?”

      She listed all of the DMTs and their pros/cons, then added complementary medicine options

      I narrowed down my options to two specific meds and CAM approaches, then asked her what she would do if it was her, based on this short list of options, she shared her opinion

      I went with her opinion. She spent what seems to be the obligatory 1-2 months appealing the standard denial with insurance and got me my DMT … almost 6 years later I’m still on it and doing well. Insurance pushed back but we pushed back harder, and in the end, I got what I wanted.

  1. Anne annie2heal Ptaszenski says:

    Gamblers choice? If doctor would listen to me. Dexamethasone doc said I’m allergic.
    First DMT Rebif then copaxone .. I was told “I’m ‘unfriendly’ to these drugs” one year hold as I was told to hold treatment until I get mental health treatment along with the new drug he would offer next visit. Doc retires because i called him out. He ignored my prior medical history … Asthma and prior problems with severe life threatening steroid withdrawl. 2nd I’m a former RN … When a patient reports medication previously taken caused severe mood disruption … Including severe depression with sucide tendencies … I told him I have been looking for medical help for 20 or more years … I have been here before. Doctors telling me this drug will help … And it does the opposite. Causes more disability.
    He retires and I am assigned a nurse practitioner. He talked me into a new MRI WITH CONTRAST Gadolinium. Each mri with contrast …. I have issues after. Clody thinking burning body sensations not able to eat and losing weight drastically. 5’8″ 110… I’m used to a little more curve .. 150 is my desired weight.
    Next offered… Zinbryta … Told by the nurse practitioner “the elephant gun to knock out the progressive MS.
    Zinbryta … Once a month injection … Sounded easy … The warnings were scary but … hey… They said it was SAFE. The drug company paying thw 8000 bill ok.
    5 months into trreatment I was scheduled to see the nurologist. Never met him before. He told me to hold the drug and we will check in a month. My personal life fell apart … Letter to vacate property that our trailer was on… 45 days to move. Ending a new drug that caused severe mobility balance AND COGNITIVE problems.
    Moved to another state … maybe we can afford living again. No work going on 5 yyears no money … No savings.
    In new home. Maybe I CAN CONTINUE TREATMENT.
    NOPE
    SSA DISABILITY AWrd and health insurance tied up between states … All a computer digital nightmare.
    Zinbryta pulled from World market.
    It was killing people. Encephalitis?
    So I ask. WHY
    DO I HAVE TO KNOW MORE THAT THE DOCTORS?
    Becauze that is what nurses did. Advocate for the parient.
    Trust has been blown so many times wirh the medical scientific community. I’m all for a cure. Just quit making me a test monkey for big pharma and greed.
    Retired doctor he ignored me the patient and when hubby advocated on my behalf … The professionals DID NOT LISTEN.
    I’m told it is all my fault.
    When money is the bottom line … Kick backs to the docs for selling the latest cure.
    And the drug companies have all the rehetoric to cover their ass. I’m left paying for the mistrestment afterpaying for all the support drugs… Drugs needed to live life while in treatment. I paid out of my pocket.
    Therefore, with money and with nearly paying with my life.
    I took the gamble. I LOST
    They won.
    When the conscious effort become deadly.
    I’m out of the drug game. I did it there way.
    There way is wrong.
    I’ll gamble that God Almighty created our body to hear. Words. Frequencies. Light n sound vibration. Neq technology the military want to have for its use.
    I’ll believe in God’s miracles before I trust mans bad medicine. The system is broken and flawed. The gambler pays with their life.
    The scientists.doctorz.and all involed are free and clear to live their life comfortable… Never knowing what they just destroyed in a human being.
    They have they money and lawyers.
    They always have the upper hand.
    STILL WANT TO GAMBLE?
    ITS YOUR CHOICE
    EDUCATE YOURSELF

    • Sandra says:

      I agree with you I am tired of gambling with meds. First Dr. Did that to me. And was sick all the time. Fininaly got fed up switched Dr to another town. Travel 90 miles to my new Dr he does not believe in it. And said that the other Dr was a idiot for what he did . He even O.D me on a couple. As instead of just m.s. I went straight into P.P.M.S. and I am allergic to a lot of meds now even steroids. So I don’t have much choice anymore. I am in a wheelchair now. And yes we fight our insurance. All the time and pay out of pocket. The one thing my new Dr makes sure that I get help on paying for some of my meds. If you don’t like your Dr always look for a different one I did, and yes I have to travel but it is worth it to me. I will not be a guinea pig for none one..

    • mike says:

      I have MS and appreciate the care my doctors have given me. The drug company supplied a MS treatment medication for me that has made a great difference and is allowing me to continue having a busy successful work life and family life. Aubagio was the choice and the medication cost about 1800.00 a month. Since I did not have insurance the company supplied it free for one year. Wow, now that was nice of them. Before this treatment I was disabled and could hardly walk, mental fog was heavy and the fatigue was relentless, and there were many other physical problems starting etc.
      I prefer to be positive, looking at the glass as half full, not empty. I appreciate all the care and medications that the drug companies have supplied. I was on Obama care but the cost was astronomical.
      I have Primary Aggressive MS and have for now turned my situation around. Doctors and Scientist spend their life looking for one breakthrough medication concerning diseases, giving up time with their families and loved ones to do this scientific work.
      No 2 people are alike, humans do not always agree, so stop complaining and find a doctor whom you like and agrees ore with your position on treatment options. It is not their fault you have MS.

      Mike

    • I agree with you. It is a nightmare. My comment will concern the VA and my experiences. The VA is apparently no different for outside the VA medical care having really stellar staff including MDs, a mixed bag, or most of staff considering VA work as a sinecure.

      My MS “diagnosis” occurred at age 27. I was having one horizon for one eye and another for the left. After being told I probably had MS I was also told that since it wasn’t “bad”, I would have to ignore small signs like incoordination, stumbling when there was nothing to stumble on, and intermittent vision issues.

      My husband and I, both PhDs in physiology of one kind or another, decided as I started losing function, we would find another track in the brain to regain or maintain function at that time as well as we could. We devised exercises for my eyes requiring cooperation between the two. We devised an exercise program involving walking and running on narrow strips to increase balance and coordination.

      It was a wonderful effort and the effect lasted years as long as I kept it up. That was 53 years ago. Each time a new problem arose we figured out something physical to do about it. Of course, finally we failed but only after 40 years of success.

      After collapsing in ABQ, NM while teaching and getting xrays to determine if I had had a stroke, or other problems. They looked and found the numerous periventricular and white matter plaques and the dx of MS was made as I had no clinical signs (CS) or laboratory indication of a stroke or other cardiovascular problem. Finally a really kind MD told me I could expect more problems but probably fatigue would be the worst. He also advised I give up driving. I quit teaching at UVM in the undergraduate and graduate programs soon after. Fatigue, grinding fatigue, was the issue.

      Then I went to the VA. That VA Hospital’s group in Woman’s Health decided based on no record acceptable to the VA, only my word vouched for my dx of MS. They did not offer to take xrays and said, I kid you not, I should see a psychiatrist and the VA had plenty of those. The women in that department really disliked my questions about how to best handle all the problems I was having that could be attributed to MS.

      In defense of “asking questions”I gave the NP in charge and the foreign trained MD, a verbal history of my academic preparation, how each of my degrees were earned in three years–the BS, DVM, PhD and MSN (Family Nurse Practitioner–which enabled me to formulate and ask questions about my state of health. They were furious…all my academics were in areas that made me quite able to ask questions… and they were angry I hadn’t told them. (When I share this information with anybody the results are either great happiness that a women had done “all that” or anger which is never explained.) I have found many men who don’t like this information. One MD asked if I had slept my way into those degrees.

      After watching and hearing the nurses involved in my care titter as I stumbled my way out of that VA, I decided to go to another VA but in Pittsburgh, PA. What a difference. Except for the MDs who dislike older women in the VA medical system, all the rest have been stellar. I am now more or less in control of my MS (I can function much better with the drugs prescribed), my RA has been diagnosed and treated beautifully, and we are now examining the role of Sjogren’s Syndrome which I have had much longer than MS.

      The first VA hospital almost killed me and the second VA hospital saved me. I have appropriate appliances for when I cannot walk and fatigue is overwhelming. Braces for my RA and Sjogren’s is still a wonderland of “Hmmm-m-m?” The people from nurses to MD specialist are very interested in progress. Not one has alluded to a psychiatric problem and only two have said I am too old for any operations (my L4 is damaged and an osteophyte is growing into my esophagus from the anterior side of C1) or ‘really any care’. (One doc asked me how long I thought I would live and wasn’t I too old and taking up too much time at the hospital when younger people would benefit longer than the time I have left.

      So, in the end, I decided I was incredibly lucky to have the VA Pittsburgh. My PCP is an outstanding young doctor. No poorly trained NPs in this place, I am sure. It is shaming to me that any NP would be like my first VA experience.)

      I wish you the best. MS is hard especially as it progressed. It is challenging and you must NOT give up. Read, share with your doctor and others. Just like we are doing with this blog.

  2. chris n says:

    although the primary gamble is choicing the right drug but the ridiculously over priced drugs are equally a major part of
    this gambling process!

    MSERS going bankrupt to
    ani-up for this gamble that they hope to win is so unfair and risky

    this article doesn’t even mention the cost factor of this shameless gambling system

  3. Myke says:

    Another gamble is whether to get HSCT to try to cure MS. There are some pretty big potential side effects. At least one doctor is saying it should be a first line therapy.

    • Christopher says:

      Myke,

      HSCT is not a cure, and it only helps people with tissue left to use. If nervous tissue (the axon and dendrite) is destroyed–which there is no way to know completely–you won’t know any difference. And on top of that you are now once again open to developing any number of childhood diseases that you have to be re-innoculated against, and it’s not that easy.

  4. Christopher says:

    Ed,

    Thank you for your informed and thoughtful article.

    I have dealt with many of these issues over the last 17 years, as well I have experience from multiple perspectives concerning this issue–I’ve worked as a volunteer in a university stem cell lab, and done extensive research on MS drugs and the labs that produce them.

    I wish I had the foresight and courage to be much more aggressive with my treatment in the beginning. I’m sorry to hear about bad experiences with doctors–I had some too, and they are an unfortunate reality. Just have to do a lot of homework and keep reaching out until you find a good or great one. Also, I apologize if I burst anyone’s bubble… but there aren’t any proven ‘natural’ ways of lessening or curing MS, period. They are all anecdotal–every single one–and things like Terry Wahls diet for example, just end up confusing the issue even more. Unfortunately it is a gamble of sorts, as there are no tests available yet to predict which drugs will work best, let alone what course the MS will take. It is a huge gamble to hope that multiple sclerosis will take a benign course. If genetic mutations were such that MS was allowed to develop in the first place, the physiological lottery is already really stacked against you. Neurodegenerative conditions don’t respond to willpower. They are multifactorial and multi-systemic, so they are nearly impossible to control. Something people don’t talk about is that there literally is no cure for MS–it is a forever disease, just with some people without symptoms for long periods. I really wish that was everyone. As far as any greed and purposeful holding back of cures, that just isn’t so. Though yes some greed per se, and competitive pricing, does harm groups of patients, there are ways around it. A good first step is to contact the agencies and societies (like the NMSS and MSAA) for assistance and recommendations.

    • Ed Tobias says:

      Thanks for sharing all of that information, Christopher.

      The more, accurate, information we can gather about our treatments the better. The NMSS and MSAA websites are a valuable source of that info, as is the site of the UK’s Ms organization (www.mstrust.org.uk).

      Regards,

      Ed

    • Tamara Sellman says:

      Thanks for illustrating how much MS treatment falls into these gray areas. I’m clearly a lucky one, I have an amazing set of doctors, my first DMT (Tec) + alternative therapies seems to be working (but who knows for sure?) and my insurance company and assistance programs have been, 95% of the time, amenable. That said, I live in an area with a high density of MSers (the PacNW) and many of my friends with MS have some pretty bad horror stories to share, but then again, they also have more severe cases of MS than I do. Everyone is so different, it’s hard to really make apples-to-apples comparisons when it comes to this disease.

  5. Dale says:

    I have ppms with one year left before Medicare kicks in. Lucky still under wife’s insurance for now. Anyone with history and comment for Medicare paying ? Thanks

    • Ed Tobias says:

      Dale,

      It’s not a simple answer.

      Based on my experience with traditional Medicare, Part B will cover 80% of the the cost of an infusion and my secondary commercial insurance (Medigap) has covered the other 20%. However, there are many levels of Medigap to choose from and their cost and coverage varies.

      Oral meds and injections, however, fall under Medicare Part D (drug coverage). The amount that’s covered depends on the Part D plan that you buy. And…many don’t cover our expensive MS medications at all. So, from an out-of-pocket cost standpoint, I found it much better to be treated with an infusion (e.g. Tysabri, Ocrevus, Lemtrada) than the other types of meds.

      Finally, you have the choice of choosing Medicare Advantage, rather than traditional Medicare. Advantage wraps hospital (Part A), doctor (Part B) and Drugs (Part D) into a single plan. It may be more cost-effective but it also limits your choice of doctors and hospitals to those in the group running your Advantage plan (e.g. Kaiser). It may also limit your choice of MS treatments to far fewer than the 16 DMTs that are currently available and it may require you to try, and fail, a low-level treatment, (e.g. Avonex), before it will approve one that’s considered more effective (e.g. Tysabri).

      I hope that’s not too confusing and that it helps.

      Good luck,

      Ed

  6. Diane Schaefer says:

    On the chance that someone reading this column has just recently been diagnosed and is trying to decide on a course of treatment, I wanted to share my personal experience.

    I am an “outlier” of sorts with this illness. I was diagnosed in June of 2012 (after MRIs of the brain, spine and thoracic were performed), after I suffered numbness in my toes that slowly over the course of 2 months extended up both my legs to my waist. But my first symptom was exactly 10 years earlier when I was diagnosed with Optic Neuritis in my left eye — a sudden partial loss of vision — that cleared up on its own within 9 or 10 days. In the intervening 10 years between 2002 and 2012, I experienced symptoms of extreme fatigue as well as incidents where I fell and injured myself. But I had no idea that either of these symptoms was related to Multiple Sclerosis, or that my previous bout of Optic Neuritis was often associated with the first telling sign of MS.

    I read all about the treatments for MS and learned of their side effects and made an informed decision to pass on all of them. Why? Two reasons. First, I have very weak bones and muscles and knew that any of these treatments were likely to impact me in a negative way in terms of my physical strength. Second, my father had been diagnosed several years earlier with Pancreatic Cancer and in the 6 months he lived through that diagnosis, until his death, I watched him deteriorate and lose his dignity as he tried experimental treatments that might give him some more time. In other words, the treatments made other things about his health worse. Now of course, as debilitating as Multiple Sclerosis can become, it cannot really compare to the quite deadly prognosis of Pancreatic Cancer, for which there is still no cure or effective treatment to stave off death. But that is where my head was back in 2012 when I made my decision.

    The author of this article would call me a “gambler.” I suppose that’s true. And I suppose I’m a very lucky one at that. I have not, in fact, experienced any further recurrences of MS since June 2012. Since diagnosis, I have only taken fairly large dosages of Vitamin D in order to up my incredibly low levels back in 2012 when first diagnosed. I also take the drug Lexapro (Escatalopram is the generic name) for general anxiety and depression, which I had been taking since 2008. This drug definitely has the effect on me of not feeling stressed in most situations. And since stress can be a leading contributor to recurrences of MS, I can’t help but think that Lexapro may have been helpful in that regard. And of course, increasing one’s levels of Vitamin D is essential to anyone with MS.

    Despite being an “outlier” however, I am less fortunate on the weak bones front. I have advanced Osteoporosis for my age, I’ve developed Scoliosis on my spine. And interestingly enough, I recently learned from a Endcrinologist who specializes in Bone and Mineral, that the form of infusion treatment I received to (hopefully) reverse the numbness that extended up half my body back in 2012 — and which actually worked! — was the single largest contributor to advancing my Osteoporosis and reducing my spine by about 2 inches! There are trade-offs, you see, in everything.

    Moreover, one of the more disabling aspects of Multiple Sclerosis — Fatigue — is present in me to the farthest extent possible, at least in my opinion. When I do go out, I look healthy and vital and alive. I just can’t stay out doing things for too long and once I get home, I’m in for at lest a day or two. And between the MS fatigue and my loss of inches in my spine from Osteoporosis and Scoliosis, I experience some difficulties with breathing at times. It might also be that “MS hug” I’ve read about but still can’t quite wrap my head around. I just know that I personally have met those with MS who experience more recurrences and yet, are healthier than me. And cancer runs on both sides of my family, so I may have bigger choices to make in the future on that front!

    The reason I am sharing this with you all, but in particular, those who may be facing a decision at this time, is because ultimately, it’s important for you to listen to your own body (and family history) and decide what’s right for you. The neurologist meeting you for only the first or second time doesn’t know your body as well as you do. Trust your instincts. Read. Learn as much as you can. Don’t feel pressured by doctors or anyone else.

    That said, I must honestly add this single caveat — even if my Endocrinologist had been around to warn me of the potential side effects of the treatment I was given to hopefully reverse my awful bout with numbness coursing through half my body, I nevertless would have gone forward with the treatment. As awful as my advanced Osteoporosis is and may become, I still could not have done nothing. I went from experiencing numbness in half my body to achieving a 99% recovery. Even to this day, more than 6 years later, only the tips of my toes are just a tad numb compared to any other parts of my body. I’m very lucky and I know it — and I count every day as a minor miracle. I hope all of you reading this will have a better 2019.

  7. Diane Schaefer says:

    On the chance that someone reading this column has just recently been diagnosed and is trying to decide on a course of treatment, I wanted to share my personal experience.

    I am an “outlier” of sorts with this illness. I was diagnosed in June of 2012 (after MRIs of the brain, spine and thoracic were performed), after I suffered numbness in my toes that slowly over the course of 2 months extended up both my legs to my waist. But my first symptom was exactly 10 years earlier when I was diagnosed with Optic Neuritis in my left eye — a sudden partial loss of vision — that cleared up on its own within 9 or 10 days. In the intervening 10 years between 2002 and 2012, I experienced symptoms of extreme fatigue as well as incidents where I fell and injured myself. But I had no idea that either of these symptoms was related to Multiple Sclerosis, or that my previous bout of Optic Neuritis was often associated with the first telling sign of MS.

    I read all about the treatments for MS and learned of their side effects and made an informed decision to pass on all of them. Why? Two reasons. First, I have very weak bones and muscles and knew that any of these treatments were likely to impact me in a negative way in terms of my physical strength. Second, my father had been diagnosed several years earlier with Pancreatic Cancer and in the 6 months he lived through that diagnosis, until his death, I watched him deteriorate and lose his dignity as he tried experimental treatments that might give him some more time. In other words, the treatments made other things about his health worse. Now of course, I recognize that as debilitating as Multiple Sclerosis can become, it cannot really compare to the quite deadly prognosis of Pancreatic Cancer, for which there is still no cure or effective treatment to stave off death. But that is where my head was back in 2012 when I made my decision.

    The author of this article would call me a “gambler.” I suppose that’s true. And I suppose I’m a very lucky one at that. I have not, in fact, experienced any further recurrences of MS since June 2012. Since diagnosis, I have only taken fairly large doses of Vitamin D in order to up my incredibly low levels back in 2012 when first diagnosed. I also take the drug Lexapro (Escatalopram is the generic name) for general anxiety and depression, which I had been taking since 2008. I never experienced any type of major anxiety, but this drug always helped me to just mildly take things down a notch in terms of any worries I might have in my head about anything. This drug definitely has the effect on me of not feeling stressed in most any situation. And since stress can be a leading contributor to recurrences of MS, I can’t help but think that Lexapro may have been helpful in that regard.

    Despite being an “outlier” however, I am less fortunate on the weak bones front. I have advanced Osteoporosis for my age, I’ve developed Scoliosis in my spine. And interestingly enough, I recently learned from a Endcrinologist who specializes in Bone and Mineral, that the form of infusion treatment I received to (hopefully) reverse the numbness that extended up half my body back in 2012 — and which actually worked! — was the single largest contributor to advancing my Osteoporosis and reducing my spine by about 2 inches! There are trade-offs, you see, in everything.

    Moreover, one of the more disabling aspects of Multiple Sclerosis — Fatigue — is present in me to the farthest extent possible, at least in my opinion. When I do go out, I look healthy and vital and alive. I just can’t stay out doing things for too long and once I get home, I’m in for at least a day or even two. And between the MS fatigue and my loss of inches in my spine from Osteoporosis and Scoliosis, I experience some difficulties with breathing at times. It might also be that “MS hug” I’ve read about but still can’t quite wrap my head around. I just know that despite not having the more serious aspects of MS, I personally have met those with MS who experience more recurrences and yet, are more active and healthier than me. And just as an aside, cancer runs on both sides of my family, so I may have bigger choices to make in the future on that front!

    The reason I am sharing this with you all, but in particular, those who may be facing a decision at this time, is because ultimately, it’s important for you to listen to your own body (and family history) and decide what’s right for you. The neurologist meeting you for only the first or second time doesn’t know your body as well as you do. Trust your instincts. Read. Learn as much as you can. Don’t feel pressured by doctors or anyone else.

    But even after all that said, I must honestly add this single caveat — even if my Endocrinologist had been around to warn me of the potential side effects of the infusion treatment I was given to hopefully reverse my awful bout with numbness coursing through half my body, I nevertheless would have gone forward with the treatment. As awful as my advanced Osteoporosis is and may become, I still couldn’t have just sat back and done nothing. I went from experiencing numbness in half my body to achieving a 99% recovery. Even to this day, more than 6 years later, only the tips of my toes are just a tad numb compared to any other parts of my body. I’m very lucky and I know it — and I count every day as a minor miracle. I hope all of you reading this will have a better 2019.

    • Ed Tobias says:

      Diane,

      Thanks, so much, for your detailed comments.

      I’m sure what you’ve written will be very helpful to someone who has been newly diagnosed or even someone who has lived with MS for years but it considering changing, or even ending, treatment.

      As you indicate, a patient needs be as informed as possible (while guarding against being swayed by the plethora of misinformation that’s swirls on social media). Hopefully that person will find doctor who will work with him or her as a partner in the treatment decision. In the end it’s that patient’s decision and what’s best for you isn’t, necessarily, what’s best for me.

      Ed

      Ed

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