Searching for Dr. Right

I like my doctors. There. I said it.
I was surprised recently to silently admit that to myself. Luckily, no one overheard me. This is not as simple as just liking someone. I talk They listen, and they hear me. We collaborate. I do say in frustration that I am doctored to death. That is true and undeniable. But there is no necessary contradiction here. It seems to me one has nothing to do with the other.
All of us are reliant on our neurologists. That is a fact of life. Like it or not, they become our link to faith in the future. Clergy may offer ethereal word pictures of hope, but action speaks more credibly than words. My neurologist is always present and accounted for, promising nothing but delivering a positive, upbeat message of hope. He is open-minded. That is a first. He is eager to try alternative therapies when he can grasp and relate to the science behind them.
For me, this comfort level feeds any notion of hope.
My internist becomes involved in every medical issue I face. He brings ideas and empathy and does the worrying for me. The gastroenterologist who has treated me for years guided me through two bouts of colon cancer and a myriad of GI comp-lications that followed me out of the operating rooms. I wish I could put a bolder period on the sentence, ending that siege.
In two books, I was critical of various doctors in my life, going back more than forty years. Times have changed, and many, I hope most, physicians have stepped down from the pedestal. Still, approval dos not come easy. I constantly learn that a comfort level with a doc is critical to faith in the future. It is difficult to dump a doctor when we have been under his or her care for a while. But it is too bad we seem to shop around for cars and consumer items with a more discerning eye and greater care than in the search for the perfect practitioner.
Such does not exist, of course. All of us are different. Our needs vary, and what we seek in a doc will differ. But the day of the passive patient should be long gone. How about the proactive patient? I believe we must be partners in our own care. It is not enough to say, cure me, and be done with it.

57 Responses to Searching for Dr. Right

  1. Joan L January 18, 2015 at 12:29 pm #

    unfortunately, I live in a rural area where I must travel two and a half hours to St Louis to my neuro. I have fired every single one I have seen in my local area as they never listen to me and basically say if I won’t take the drugs, don’t come back. Even at the specialist clinic that I go to I am only allowed one half an hour of time. I like the specialist but what can you really accomplish twice a year seeing one person a half an hour? I do not do any of the disease modifying drugs anymore, I am progressive since diagnosis in ’02. I tend to do alternative things like low dose naltrexone, massage, swimming, diet, etc., and we all know what they have to say about those things. The most recent offer is Tysabri and I get to tell them I will not do that in March. In my half an hour appointment.
    Thankfully my GP is a friend and I can count on her to listen and do what I feel I need. She is also the doc who diagnosed me first or it would have been much longer before I got diagnosed – after 6 local optimalogists told me eye problem was 6 different things and not one suggested it could be neurological… this was 10 years prior to diagnosis. Wonder where my skepticism of docs omes from!?

    • Richard M. Cohen January 18, 2015 at 8:32 pm #

      Sounds like managed care at its worst. I guess we get spoiled in large cities with centers getting philanthropy and avoiding the stanlehold of managed care.

      Best,
      R.

  2. Nik January 18, 2015 at 2:25 pm #

    Oh man, if this post doesn’t come at the best (or the worst, depending on how you view it) time. I am so disgusted already with the two specialists I have seen. I haven’t been listened to at all and like Joan says above, if I refuse medications, forget it they turn me right off. These are two top NYC specialists as a matter of fact. Highly recommended by good friends , a couple of which who are in the medical field themselves. Richard, I’m glad you like your doctors but please forgive me if I seem critical, but not everyone can afford a doctor who will listen. I have have to go to Drs who will accept my insurance because my husband and I basically live paycheck to paycheck (like many Americans). I called to get into your Dr or someone in his practice and they do not accept any insurance. I suppose if I could afford to pay, I’d be listened to as well? As I sit hear and read your post on this rainy Sunday, I couldn’t help but respond. It may sound harsh, but these are the facts. Doctors who don’t accept insurance to treat the general public are there only for a certain few. Glad your being listened to, wish I had the same. Let me go check my Powerball ticket now.

    • Rosanne January 18, 2015 at 7:06 pm #

      My EX throid doctor said: “well, if you are not going to listen to me and take this $1,000 medication, what are you coming here for”. I haven’t been back. Pure arrogance.

    • Richard M. Cohen January 18, 2015 at 8:39 pm #

      More and more neurologists, in fact, all docs do not accept insurance. I agree iit sucks, but what can we do? Find a well endowed center that depends on philanthropy. They exist.

      Best,
      R.

      • Hannah January 19, 2015 at 10:03 am #

        Do you have a better chance of getting into those places if you have the ability to be a philanthropist yourself? Or is it blind admission like college (which we all know isn’t really blind when “development admits” are on the line. Look up the term if you’re unfamiliar).

        Here’s why this one’s hard – because any way you slice the pie of life, it’s still unfair, no matter how much money or health or happiness or love you have. If you are “monied and sick” as R once wrote on this blog, things are easier, for sure. But that recognition and admission is exactly why this one is hard for some readers to swallow. Because of the income disparity in this country, people who have less are prone to respond with “shut up and count your blessings!!” when they read posts like this.

        We are all born into our life situations, and we all try our best to make it through. I like what R is doing here on the blog. I don’t know him, but he seems like an ok guy. He can be grumpy sometimes in his posts. I think to myself, “Well, that’s ok cause I can be a poo-poo head sometimes, too.” He’s also pretty funny in the posts sometimes (only sometimes). Finally, he also might have more finances than other people who read this stuff due to a high profile public career that he is attached to. But is that his fault? Not exactly. And you know what? There is an enormous cost of privacy and freedom you lose, basically forever, when someone you love is working in that industry. And some might argue back and say “you chose that life, it’s part of the job, you can’t complain about being a public figure.” And then you realize…you can never win. Life is still unfair any way you slice it.

        Well, we could all be communists and call it a day.

  3. Louise January 18, 2015 at 4:13 pm #

    Hmm. I am lucky enough to be able to use Richard’s doctor. I’ll stop short of calling myself fortunate, if you get my drift.:-). He is kind and smart and dedicated. But he pretty much insists that I take the drugs. I am on tysabri now. In a way, his dedication and bedside manner probably dissuade me from refusing to follow his advise. So there is a yin and yang to that too. I’m hoping that the stem cells are our answer and we will all be able to share in that!

    • Richard M. Cohen January 18, 2015 at 8:40 pm #

      Amen to that.

      R.

  4. Yvonne January 18, 2015 at 7:05 pm #

    Yes, treatment options and bedside manner is part of what is wrong with our medical system. Like everything else, you have to be $$$$$$ this tall to ride the ride.

  5. sheetrocker January 18, 2015 at 7:43 pm #

    I have been going to the same MS center as Richard for the last ten years. They do not except insurance ,but you probably could get reimbursed if your insurance company allows you to go out of network. One a side note they do except Medicare , which is what I have.

    • Nik January 18, 2015 at 8:27 pm #

      Nope, no reimbursements from my healthcare….even though my husband buys the “premium” package from his employer…which btw took another $46 from his paycheck in the New Year. happy 2015 for us! I can’t understand the morals behind a Dr not accepting insurance. Maybe someone could clear that up for me.

    • Richard M. Cohen January 18, 2015 at 8:41 pm #

      No small thing.

      R.

  6. Grant January 19, 2015 at 3:02 am #

    Doctors not accepting insurance is piss-poor. Everybody is pointing fingers at everyone else. It’s exasperating. I had a great doctor that I got along with really well, but good things never last. He had an aneurysm in his brain that burst and it took three days before he succumbed. Very nice man and a hell of a doctor and teacher. I agree with you Richard. We must all be more discerning, and always be our own advocates. Better that way.

  7. Joan Z January 19, 2015 at 7:16 am #

    I have fired more neurologists than I care to count. I do know that over the 20+ year dance with MS, I’ve become a more confident (arrogant) patient. Survival tactic, I suppose. Brash docs no longer reduce me to tears. Insurance unravels me more than doctors do. I think arrogance is mandatory for anyone who even wants to be a doctor (or politician, but that’s another story. There are things about this life that are just difficult, but there are so many things made unnessarily difficult by difficult people. I have to remind myself that I’m looking for the best doctor, not a best friend.

    • Richard M. Cohen January 19, 2015 at 2:14 pm #

      Right. If you get rid of the difficult people, there will be nobody left.

      R.

  8. Dale January 19, 2015 at 11:37 am #

    Maybe I know too much. I’ve given up on doctors for now. I’ll follow the research and if something actually has solid results maybe. So far it’s pretty much down the road of manipulating statistics.

    All I need is to find one person who all this snake oil has actually worked for. Until then my skis will unfortunately sit sharpened the corner. Maybe I can turn them into runners for a handicapped dogsled.

    i

    • Richard M. Cohen January 19, 2015 at 2:16 pm #

      Do it. Sounds like fun.

      R.

    • Grant January 19, 2015 at 3:56 pm #

      Your journey, and wait, will be very long. Unless you are a research scientist that research you are following won’t explicitly show (in layman’s terms) those “solid results” you are looking for. In the meantime multiple sclerosis continues its wanton carnage in your central nervous system unimpeded. Something to think about while going solo without medical intervention. That isn’t wise.

      • Richard M. Cohen January 19, 2015 at 7:33 pm #

        Agreed.

        R.

  9. Dale January 19, 2015 at 5:24 pm #

    I’m in science. I know someone that works for Biogen. Who knows if sticking myself with the same size needles I use for exeriments for over a decade gave me an extra run or two on the moguls. As I said maybe I know too much.
    But that’s why I’m happy about this blog, way too much BS floating around out there and maybe a whack upside the head is what I need right now. Maybe I should take your advice and get a ride to Boston, maybe there’s a neuro up there that gets it. Maybe even one with MS. Maybe maybe maybe. Meanwhile I’m gonna start designing that sled, this years races have already started. I’ll use my old skis. There might be a few runs left in my good ones when I hit that miracle.

    • Hannah January 19, 2015 at 6:23 pm #

      I am biased and live in Boston and the docs are the best and I will help you build that sled. Go Red Sox.

    • Richard M. Cohen January 19, 2015 at 7:34 pm #

      Go for it.

      R.

  10. Jan January 19, 2015 at 7:15 pm #

    Hannah, you made me chuckle, then smile, with your responses.

    And there are times when Richard’s “grumpiness” will make me smile a smile of understanding. Of empathy. (Of thanksgiving in a way… he can communicate what I may be feeling, though it also pains me that he’s going through this or that).

    Richard, my 87-year-old mom still thinks doctors are gods (and raised us daughters that way). Wow, times have changed. Ten years of MS and related experiences have also changed my perspective. I research doctors, philosophies, approaches… and realize that doctor people are really people like everyone else. Some really care, care about an individual. To some, it is a job. And not an easy one, very likely–one without closure or personal extension. They are who they are, and I am who I am (not always so great at life, either: it is humbling).

    Hard, I should think, to be in an industry in which closure and true help are sparse. I like closure, the feeling of hard work and efficacy. I like that my clients are happy with my work. That it has meaning for them. And I like being a “proactive patient.” (Don’t actually like having to be a “patient,” but since I can’t seem to escape this, I like having and making choices).

    • Richard M. Cohen January 19, 2015 at 7:38 pm #

      You are traveling the right highway. You will get there.

      R.

  11. Dale January 19, 2015 at 7:54 pm #

    Hannah! You really do make us smile. Farrell’s niece was a classmate of my pitching son until he got enticed by a private school (that neice enticed to a different private for hockey) With the horrid lack of snow already planning the Pawsox games. Put me in Coach, I’m ready to play! Just can’t get enough of nachos and fake cheese at the ballpark.

    And Wilfork pulled some guy out of an overturned Jeep on his way home from the game last night. This place has everything! Boston Strong.

    The question is B&W, St. Elsewhere or Massport General. So many options, so few recommendations. Thanks for raising my hopes. My GP’s biggest help lately was lecturing my husband to buy me a better brand of beer. He actually believes me when I swear one at dinner helps my legs the rest of the evening. In fact the tides’ out, think I’ll go get one. Cheers.

    • Elizabeth January 20, 2015 at 3:07 pm #

      A doc at B&W was not helpful to me. I went for a second opinion (about medication and treatment plan) after I was diagnosed and he undiagnosed me. You know why? He insisted I run down the hallway outside of the room. I didn’t run but I moved as fast as I could and he kept saying “faster, faster” so as I was stumbling and trying not to fall into the wall, he pulled me back in the room and said, “If you had MS, you wouldn’t have been able to do that.” So two things happened after that. 1. I told him that he was doing a major disservice to his patients to tell them after years of trying to figure out why being so sick that he would throw me in the CFS bucket. I have a sister with MS and had been sick for the better part of 15 years with ups and downs, and my spinal tap was conclusive according to my neuro. 2. When my husband and I went back to the hotel room and I was stoic, he said, this will cause our divorce. When I asked him what he meant, he said, you have been told you don’t have MS now and because I’m telling you to consider that he might be right, you’re going to focus on this and we’ll end up fighting about it and it will cause our divorce. A day I’ll never forget. Talk about support.

      • Hannah January 20, 2015 at 5:40 pm #

        He sounds like a doofus jerk (to say it nicely) who should be fired. Hopefully he isn’t practicing medicine any longer.

      • dale January 20, 2015 at 8:19 pm #

        I hear ya. I went there for a second opinion and got a new guy with crappy bedside manner. At home I feel pretty used, too much complaining about what I don’t do now. But in your case they both need a whack upside the head. I do hope they canned that Dr. Not sure what to do about your husband.

      • Hannah January 20, 2015 at 11:06 pm #

        Weird that we were talking about this earlier because a doc was shot and killed at B&W today. News just broke locally that he just died and the possible motive was that the doc treated the shooter’s mother a month before she died. We can be unhappy with our doctors (I have been too, although I don’t have MS) but let’s not actually kill them. Sad sad sad, wrong wrong wrong.

      • Richard January 21, 2015 at 1:58 pm #

        That dr. sounds like the south end of a northbound horse. Please dump him.

        R.

  12. Dale January 19, 2015 at 8:04 pm #

    Oh, and mushbud Jodi Bailey running the Iditarod again this year is a Martha’s Vineyard native. Finished the 1000 mile Yukon Quest and 1080 mile Iditarod back to back as a rookie. You’ll be in good company with that sled.

    • Hannah January 19, 2015 at 9:14 pm #

      I don’t have any recommendations personally, but I could ask a friend who has MS and is being treated here if you want to know her opinions. There is also Tufts Medical and Beth Israel from which you could choose a flavor.

      Not so sadly, I have been in a sled pulled by huskies. I spent a lot of time in Maine, so naturally that experience had to happen at some point. But that also means that I like the Portland SeaDogs over the Pawtucket Pawsox. However, I prefer to yell “Pawtucket Pawsox” in a loud screaming Rhode Island-y voice because that’s usually more fun than just saying “Portland SeaDogs.” Good night.

      • Richard January 21, 2015 at 2:02 pm #

        Have you thought of professional help?

  13. Grant January 19, 2015 at 10:21 pm #

    Check out Accelerated Cure Project, in Waltham, MA. It was originally started around 15+ years ago by a guy named Art Mellor–who also happens to have MS. Also check out a neurology professor in Southern California, Dr. Michael Demetriou. He is doing very interesting work with cellular glycosides and their effect on autoimmunity. That’s basically sugar proteins on the surface of cells. There are a lot of people doing great work. But any “solid results” are a long way off unfortunately. Contact some of these people, or all of them, and ask them their thoughts on going forward without some type of drug therapy. It can only help to be more informed. You can never “know too much,” Dale.

  14. Dale January 20, 2015 at 8:09 am #

    Thanks for advice. I actually looked with interest at studies of Estradiol associated with general improvement in pregnant women during their third trimester. That, like CCVSI, has been inconclusive in terms of reproducible results. I have enough anectdotal evidence to know there’ something to it.
    I know a few others who have shifted to SPMS that are off medication now. Except for trials most all of the standard drugs are aimed at RRMS. Any confidence, assuming you accept the data, has really been in that arena. That is why Richard’s experiences here are so valuable. And we know he’ll give us the straight stuff on how it’s working for him.
    As most medicines are derived from plants, I’ve not discounted there may be answers out there in botanicals. That’s why Terry Wahls experience has been so interesting despite hard to reproduce as of yet. Considering roughly 90-95% of most diseases have no cure (one we seem to fear most, cancer, is actually one of the most curable if caught early). We can only hope this will be one of the 5-10 for which a cure actually is found.

    • Grant January 23, 2015 at 1:50 pm #

      There aren’t any drugs for SPMS. Some people take Novantrone as a ‘hail Mary’ drug of last resort, but it causes cardiac toxicity eventually. Other than that people do take other medications but they do absolutely nothing.

  15. Bill Garcia January 20, 2015 at 10:50 am #

    I too am fortunate to a great team of doctors that I really like. Of course the two I see most are my PCP and my Neurologist. They are great listeners and are open to any suggestions I may have. In fact, yesterday I visited my Neuroligist and we were all talking about the best course of treatment for my flare, which happens to be a major flare. I had done some research for an alternative to IVSM since I can no longer take them. I suggested Medrol, to my surprise he agreed and wrote the RX. If I call his office he gets on the phone and talks to me. You don’t find many of those.

    The doctor patient relationship is vital to our care. The only way I switch is if he retires or, God forbid, he passes away.

    Your post is dead on. Great post!! Keep up the good work. I look forward to your new posts.

    Kindest Regards,
    Bill

  16. Elizabeth January 20, 2015 at 3:21 pm #

    I waited a long time to get in, but I am also lucky to have a great Neuro, PA, and PCP. The is a little bit off topic or maybe not, but I am in between meds right now. Gilenya sent my white count down too low so I’m on LDN only and symptom management. No pain meds. I am having a hard time with the acceptance factor. I almost feel like if I don’t go to the Dr. , try desperately to get a job again, and pretend I’m not sick, I won’t be sick. I’ve only been diagnosed since April 2013. Is it normal to still be feeling this way?

    I was supposed to go on a trial, but it was too time consuming and I may need to be out of state because of a sick family member so I didn’t want to start it and not be able to finish. I have heard so much about DMDs being faulty. I know I should go in and talk about next steps but I’m so tired of the MRIs, CTs, labs, etc., I want a break. Is that wrong? Will that be harmful?

    • Richard January 21, 2015 at 2:05 pm #

      Great dialogue. You do not need me.

      R.

  17. Hannah January 21, 2015 at 3:02 pm #

    RE: “Have you thought of professional help?”

    Excuse me Richard, do you have an issue with the general embrace and appreciation of the Rhode Island accent? If so, I think you should discuss it with yer wife.

    • Richard January 22, 2015 at 9:37 am #

      If I had a Rhode Island accent, I would change my identity and join a witness protection program.

      • Hannah January 22, 2015 at 10:00 am #

        You might be terrible. The complete worst. Or the best. But either way, if you keep talking like that, you might be sleeping on the couch. Just saying.

  18. Nancy Cincotta January 21, 2015 at 9:10 pm #

    I love my neurologist also, she has been great and caring throughout all of my hurdles. I recently went through my second bout of breast cancer and she stayed in contact with me throughout all of the chemo. and hardship. But now I am going to panama for stem cell treatment and I haven’t been able to tell her. I feel as if I abandoned her, but there is nothing here to offer me. I will have to call and explain.

    • Richard January 22, 2015 at 9:40 am #

      If you are convinced the treatment inPanama is safe and right for you, do it. Trust your instincts. Your neurologist will understand.

      R.

  19. nancy s January 22, 2015 at 2:03 pm #

    Richard, I remember you saying you had been in Hartford at the Mandell Center. Can you share any thoughts regarding the neurologists at the center?

    • Richard January 22, 2015 at 7:56 pm #

      Have not been there, but met with a men’s group when they came to NY. Good people, but I do not know about the neuro;ogists.

      R.

  20. Matt January 22, 2015 at 2:36 pm #

    Richard I don’t know if you are allowed to talk about your stem cell procedure but maybe you could start another discussion that could include some of the other patients included in the procedure to talk about it and if you or they are seeing anything from it. I guess you could include anyone that has had a stem cell procedure. Just a thought since we are always talking about hope and this procedure has really given hope to our community as well as other autoimmune communities.

    • Richard January 22, 2015 at 7:59 pm #

      We really do not know each other. We are at different stages, most of us with more to come. I am learning patience. It still is early. Stay tuned.

      R.

  21. Michraf January 22, 2015 at 4:08 pm #

    I have seen that doctor since I was diagnosed 12 years ago. I have never had a bad experience with anyone there. The place is simply awesome. I did, however, go to someone else. Closer to home and accepted insurance. Couldn’t stand it. Needless to say, I returned to NYC and will never leave that practice.Until they find the cause and cure, then I’ll meet them at a bar!

    • Richard January 22, 2015 at 8:02 pm #

      Save me a seat.

      R.

  22. henriette January 23, 2015 at 10:29 am #

    The first neurologist I had was the most depressing dude I have ever talked to and pretty much had me ordering a wheelchair. Needless to say, I didn’t go back. Now I love my neurologist, Dr. Leslie Weiner at USC Medical Center in Los Angeles. My favorite quote from him “Stop calling them drugs, it’s called medicine” my second favorite was when he brought in my MRI and held it up the light, “Well the good news is: you have a brain.” Might be too much for some but for me his humor makes me smile in the middle of finding out my lesions are the size of Montana.

    • Richard January 26, 2015 at 3:51 pm #

      Great. Neurologists who make anybody smile are rare.

      R.

  23. MB January 23, 2015 at 6:22 pm #

    My neurologist only treats MS patients. He is brilliant, compassionate, somewhat arrogant, not risk adverse, a research geek, and he drives a Tesla. What more can I ask for?

    • MB January 23, 2015 at 6:23 pm #

      *averse

  24. Vikki January 23, 2015 at 9:32 pm #

    I am very lucky to have had the same awesome neurologist since my diagnosis at 23. I am 46 now. I think what I have always liked and respected about her is that when she doesn’t have the answers, she is always willing to send me to see an MS specialist to find out about new treatments. She is honest and open about my progression and realistic but always hopeful for the future. She has known me so long, we laugh about how I used to come into her office with my infant daughter in her carrier, and she is now graduating high school this year. I think there is a trust that comes with years seeing the same doctor. I know that no matter what happens, she will always be in my corner advocating for not only me but her other patients. I find comfort in that.

    • Richard January 26, 2015 at 3:53 pm #

      That is great.

      R.

  25. Laurie February 23, 2015 at 7:57 am #

    People think dating is hard. Try finding a good neurologist is my reply.