Batter Up

Doctors in the United States practice the best medicine in the world, to which I say, when they are finished practicing, let’s see if they can do it for real.   According to the Commonwealth Fund, our healthcare system is the costliest in the world.  Yet the quality of care ranks last among major industrial powers in the world.

I think we have known that sad fact for a while.  I wonder how those of us with progressive chronic illnesses evaluate the ammunition in the holsters of doctors.  Can physicians hit the broad side of a barn with whatever they are firing?  My progressive MS long has had the best and brightest shooting blanks.  My doctors are good people without options.

Before the stem cell trial, I had abandoned the regular care of any neurologist.   I grew weary of trying therapies intended for relapsing MS to see if they did any good. I went through all of them.  The interferons did nothing to stop the progress of the illness.  IV steroids offered mere moments of slightly enhanced muscle strength that had no lasting power and threatened bone density.

I embarked on a one-year regimen of chemotherapy, Cytoxan, and barely made it to six months.  The stuff only wiped out my quality of life, making me constantly sick, weakening me and turning my hair white.  I don’t much care about the hair, but I morphed into a fragile fellow who might take a tumble in a strong wind.

After the daily injections of another drug intended for RR MS, I moved to Tysabri, which had no effect, and then moved on to the oral agents.   By now, I was adding up the bus fare spent crossing town for treatment and decided something had to give.  And so I retired from my job as a professional patient, no letter of resignation needed.  I quietly vanished.

Don’t get me wrong.  I asked the docs to think outside the box (Good line, huh?).   Physicians cannot be faulted for throwing everything they have at a disease.  Sometimes it helps, they say.  Usually it does not, I reply, but it sure beats doing nothing.  Frustration knows no end, though I am hardly the only one in this position.

Chronic illnesses by definition are incurable.  Often they can be managed, never visible in the rear view mirror.  Expectations can be out of whack and highly unrealistic.  We hope, therefore we are. Positive outcomes become elusive, but we must continue chasing them.

Too often, however, we expect better than we get, maybe because doctors do not communicate with us.  We have to be our own advocates.   Ask questions.  Challenge doctors.  Push hard.  Who better to do that than the person in the hospital bed?  We need to step up to the plate.  The on-deck circle is empty.  I would rather be treated in the USA than anywhere else, but I would like to be treated a little better.

 

 

 

 

28 Responses to Batter Up

  1. Matt April 16, 2014 at 10:40 am #

    Well said, you’re the best!!!!

  2. Joan Listen April 16, 2014 at 11:44 am #

    This hit home for me. After being diagnosed at the age of 49, I have continued going downhill for the past 12 years. I only tried one of the drugs I knew that it made me much worse and I didn’t want to live that quality of life. In the meantime I have intervened West swimming 3 times a week and a very very healthy diet. Paragraph

    • Richard M. Cohen April 16, 2014 at 7:59 pm #

      Joan-

      Go for it. Right road.

      Best,
      R.

  3. James April 16, 2014 at 11:51 am #

    Couldn’t agree more Richard . I’m down to grasping at straws. But so be it because when the straws are gone,the fight is over

    • Richard M. Cohen April 16, 2014 at 8:01 pm #

      James-

      Grab every straw you can. Exercise and eat well. Sleep. Do everything in your power.

      Best,
      R.

  4. Joan Listen April 16, 2014 at 11:54 am #

    This hit home for me. After being diagnosed at the age of 49, I have continued going downhill for the past 12 years. I only tried one of the drugs and I knew that it made me much worse and I didn’t want to live that quality of life. In the meantime I have intervened with swimming 3 times a week and a very, very healthy diet.

    Nothing has worked and I am on the hope train for stem cells. But not big hope. I don’t have relapses, just steady withering. I live in a rural area and cannot even find a neuro who isn’t mad at me because I am not willing to take their poisons!

    It’s hopeful to see research and successes in other countries but…I know everything is 10 years out of FDA approval.

    I keep positive because I came that way, but, man, it is getting tough!

    • Richard M. Cohen April 16, 2014 at 8:04 pm #

      I know the feeling well. Where do you live? How is the care? I hope you look for alternatives.

      Best,
      R.

      • Joan Listen April 18, 2014 at 10:10 am #

        I live in Carbondale, southern Illinois, a couple of hours from St. Louis, where my neuro specialist is located. I just use my GP, who I have been with 30 years. she is the one who recognize I was getting weaker on the righft side and referred me to a neurologist in the first place. I had been to 6 eye doctors about my optic neuritis but none of them caught it or ever said you should see a neurologist. So I read research constantly and she believes me when I ask for something. I found low dose Naltrexone several years ago and it is the one thing that has helped my MS fatigue. It has not stopped progression. Thanks for your journal,I always look forward to reading it. Best of luck to us all.

  5. Christopher April 16, 2014 at 11:54 am #

    You offered the best advice in your last paragraph, “We have to be our own advocates.”

    When I was first diagnosed (still unsure of the validity) with MS in August, 2002, I was asked by my then neurologist which DMD (disease modifying medication) I would like to start with. I did a cursory search of my options, read more than a few science abstracts and articles, read a few books by some noted personalities and some obscure authors, finally settling on Betaseron. I was at the time deathly afraid of needles–yet much more afraid of actual death–and this seemed the lesser of all known evils. I have been through multiple regimens myself; the interferons, the monoclonal antibodies, the steroids, the chemotherapy agents, the immunosuppressants… and none has really done more than make me feel awful while I was continuing to become progressively more disabled. But I would always think back to the nurse provided to me by the biopharmaceutical company that makes Betaseron. Her name is Janie. She is a better secret weapon against this onslaught of chaos than any drug available–and possibly any in the pipeline. Always ready with an easy smile and the best, pointed questions. A firebrand of a woman, she also doesn’t put up with evasive answers and will walk through fire with anyone to make her strength available for others to capitalize on. Early in my treatment with Betaseron I had to learn to give myself injections and it wasn’t going well. Janie explained to me that, “yes it’s hard… but Chris, think of how much more difficult it will be without it and progressing without stopping. This is your best chance, and you are doing it for your life.” Then I thought about it, picked up the syringe and made more Hollywood style faux stabbing motions at my leg, all very maudlin. My mother was with me and agreed to help move this painfully inept scenario along. That poor woman almost stabbed my femur slamming that needle into my leg. Not out of anger but because she didn’t want to do it halfheartedly and hurt me. “I’m so sorry, Chris… I didn’t mean to do it that hard.” Actually, there wasn’t any real pain. I smiled and said, “Mom, it was perfect.” Then Janie told me something I haven’t forgotten since. “Your mom really cares about you, and it’s fine to get help with this… but you need to learn to do it yourself because other people aren’t always going to be there.” She paused for a moment, looked at both of us and then leaned in close, “Chris, you are stronger than you think and I know you can do this; just keep practicing. Also this isn’t the end of it… keep up your research and keep looking for something better–don’t give up. I have a lot of faith in you and you have to remember that you must be your own advocate. If a doctor doesn’t give you good answers, then ask more questions. If he or she doesn’t give you enough time, or won’t listen, don’t put up with it and go somewhere else. You must be your own advocate… this is your life, and quality of life, we’re talking about.”

    Thank you, Janie. And thank you, sir for not so much showing strength… but showing through your words what being your own advocate looks like, in a way. I think that’s a big part of what all of these people who post here are gravitating toward.

    • Richard M. Cohen April 16, 2014 at 8:11 pm #

      She was right. All of us are stronger than we think. You are in charge. You would not want ir any othetr way. Keep going.

      Best,
      R.

  6. JerryD April 16, 2014 at 2:25 pm #

    Richard,
    It is always refreshing to read your posts. I look forward to them.
    I saw my neurologist yesterday and told him about the MSC-NP trial you were in. I wasn’t surprised that I gave him many details about which he knew nothing. His opinion on stem cell treatments is that stem cell treatments are the ‘future’ of medicine. Thank you, Richard, for being in the vanguard.
    Jerry

  7. tzootsi April 16, 2014 at 4:33 pm #

    Richard, i am following your journey with great interest and hope – stem cells seem to be one ray of optimism. My wife has what appears to be a mild case of PPMS. She was dx’d with RRMS 7 years ago even though she’s never had a remission or flare up. She did have 3 rounds of CCSVI treatment, and the first time did cause some noticeable improvements, but they didn’t last. Have you ever considered a CCSVI procedure?

    • Richard M. Cohen April 16, 2014 at 8:13 pm #

      She was right. All of us are stronger than we think. You are in charge. You would not want ir any othetr way. Keep going.

      Best,
      R.

    • Richard M. Cohen April 16, 2014 at 8:14 pm #

      No. Balloons clo se. Stents are dangerous. Will not go there.

      R.

  8. Ken April 16, 2014 at 6:17 pm #

    I agree, “Well Said”
    I does get to be a nearly impossible path,
    don’t know if you have looked this direction at all , Richard, I am doing what I can to get a prescription for Medical Cannabis to take another shot at symptom relief and improvement.

    I heard ( or read) some good stuff, so worth a try

    Ken

    • Richard M. Cohen April 16, 2014 at 8:17 pm #

      Ken-

      I have been smoking it for years. Don’t know if it helps, but I enjoy it. What is wrong with that.

      R.

      • Matt April 17, 2014 at 8:39 am #

        I love that reply Richard!!!!!!

  9. Kyle April 17, 2014 at 9:26 am #

    During my thankfully brief diagnostic bounce around I bought a copy of Elizabeth Cohen’s The Empowered Patient. From it I learned that no one in the medical community has my best interest at heart, all the time. That’s my responsibility. I also learned that it’s OK to question doctors. It’s even OK to make a pain in the ass of yourself!

    What a concept!

    Kyle
    PS My current MS neurologist has yet to require me to raise an eyebrow, let alone my voice 🙂

    • Richard M. Cohen April 17, 2014 at 11:14 am #

      Kyle-

      Keep pushing. Will keep doc on his/her toes. That is only good.

      Best,
      R.

  10. L April 17, 2014 at 1:52 pm #

    Hi Richard,

    Like many, I’ve been following your posts with great enthusiasm and curiosity. Thank you for sharing your experience.

    I have a few questions that you may be in a position to answer at some point. What does the healing feel like? Is it like the burning or electric shock sensations people feel with peripheral nerve recovery? And what is the impact of said healing upon serum micronutrient levels like iron and copper which would be essential to remyelination? Are “they” monitoring those levels?

    Apologies if my questions are out of line. Curiosity is the second or third band of my existence.

    L

    • Richard M. Cohen April 17, 2014 at 8:26 pm #

      L-

      Not out of line at all, but premature. I do not expect results for months. Please stay tuned.

      Best,
      R.

      • L April 18, 2014 at 8:58 am #

        Thank you. I will!!

        Be well,
        L

  11. L April 17, 2014 at 1:53 pm #

    I hate iPhone autocorrect! Bane of my existence!! It might be a band too though.

  12. Lori April 17, 2014 at 3:12 pm #

    Richard – I can relate to your tweet about pushing the Doctors to think outside the box…and the squeaky wheel gets the oil. When I was trying to get a diagnosis for my son’s health condition years ago, I was unrelenting….a barracuda. (And the diagnosis took 9 years) But, for some reason – now that I’m trying to get a diagnosis for some health issue I have…I don’t have the same push. After several months of tests and scans, It’s getting difficult for me to keep asking for more….almost like I should be apologetic for burdening the health care system. But, I know if I’m not fighting for my life…who will?

  13. Richard M. Cohen April 17, 2014 at 8:31 pm #

    L-

    Right. Eat you Wheaties and keep fighting. No one is going to do it for you. You owe it to yourself. It worked once before. Keep at i†.

    Best,
    R.

  14. Mark April 18, 2014 at 5:31 am #

    Very perceptive and a joy to read. You know you’re setting the bar ever higher, don’t you? Thank you for writing what many of us think. Have been on Tysabri for nine years and now being told I can’t come off for fear of a major relapse. As you said, the doctors try. Agree that eating well and exercise helps. I think this disease demands a strong will and a deep desire to refuse to give in to it. If that fails denial helps. My MS hates it when I ignore it. Seems to work for me and frustrates my family to no end.

    Best,

  15. Jon Chandonnet April 18, 2014 at 3:32 pm #

    Been living with MS for 17 years. Tried denial for the first eight. Did some crazy stuff to prove I was whole (marathons, Climbed Mt. Shasta, Whitney, etc. worked long hours and hard days then things caught up to me. Tried the interferons. They kicked my ass. Then did this radical detox raw lifesytle for a few years. On Copaxone now. Holding my own. Doing all I can to keep walking. Been on a quest to run again for the past two years. Who knows if it will happen, but I’m having fun trying! All the best!

  16. Wendy Allen April 25, 2014 at 8:17 pm #

    HI, Alternative doctors think outside the box. Alternative medicine may rebuild your body/brain fast. I need no gluten (wheat/barley/rye..oats)/no GMO/dairy/soy/sugar/heated oils/certain fats to be and vitamins/good oils and LDN. LDN alone is awesome help, but the diet is still needed since LDN is a low dose. Nature’s Plus- Source of life multiple, Vit D3, Vit C, zinc, Mg citrate, fish oil and more help me. It is basically the Asian diet, but no MSG or gluten…eating organic is good and cooking food at home. Anything in a box/bag/ingredients may not be healthy. People can make gluten free pizza, but restaurants maybe contaminated what say they are gluten free. This diet saved my life/suppresses my MS. I also needed to detox heavy metals with EDTA/DMPS IV chelations. I need Amour thyroid, bioidentical hormones, Vit B12 methylcobalamin shot/under the tongue kind/spray. HCl and enzymes with meals. It is worth it to eat this way. Thanks for all your efforts that also help others. To me God is real…helped me find they way to suppress my MS and helps me daily..gives me direction/help. Best wishes.