async="src="/ Taking the Long Way Home: A Second Opinion: How Do I Know Which Way to Go?

Tuesday, October 29, 2019

A Second Opinion: How Do I Know Which Way to Go?

Disclaimer: This post is not intended to give medical advice, but to share my personal experience. You should always consult your medical provider for any concerns regarding your health. In addition, I am pro-vaccine and am not advocating for anyone to avoid a vaccine based on my experience.

Last February, I developed a rheumatoid arthritis (RA) flare that never seemed to end. Initially, I wasn't sure what was going on but my endurance was suddenly gone. Poof! It was as if I never had run a step in my life. My heart would beat into the red zone if I moved any faster than a walk. I was experiencing an uptick in joint pain and such severe fatigue that I could barely climb a flight of stairs without having to stop to catch my breath. Running became such a challenge that even the run/walk intervals I had used successfully in the past weren't helping me.

Was it the weather? Or something else? As the symptoms continued, I thought about everything that could have caused this flare. Then the light bulb went off. I had received a shingles vaccine week earlier-- could that have triggered an immune response that fueled my disease? Upon the advice of my rheumatologist, I held my dose of Humira the week before and after receiving the vaccine so that my immune system would properly respond to the vaccine. The day after I received the vaccine, I developed a fever and body aches. I figured it was just a typical vaccine reaction. I initially felt better but after a week or so found myself in a full-blown disease flare.

Unfortunately, this flare lasted for months. A course of steroids would tamp down my symptoms, but as soon as I stopped them, the flare would fire up again.

A long time runner, I have always used my runs to measure my health. I might wake up in the morning and feel bad, but if I have a run scheduled and it goes well, I know that I'm well enough to go to work and proceed with my day. I think most runners are in tune with their bodies and can read their symptoms pretty well. As a nurse practitioner, I joke that I have enough medical knowledge to be dangerous. The bottom line is that I have the ability to figure out what is happening with me.
If you have been reading my blog for some time, you know that I struggled with running and other endurance workouts for most of this year. I dropped down to the 5k in many of my planned races as well as DNSing races that didn't have a shorter distance as an option. It was disheartening as well as discouraging. In August, I wrote a post titled "Can I Even Call Myself a Runner". I was really depressed and frustrated. I thought I might not be able to run anymore.

My rheumatologist downplayed my symptoms. Among the other things she told me, she said that since my inflammatory markers were normal, my symptoms weren't due to an RA flare. Frustrated with her response to my concerns, I decided to seek a second opinion. Even though there was a 6 month wait for a new patient appointment with the rheumatologist I wanted to see, I was willing to wait. I knew that the flare would take time to resolve and that there was nothing magical to make it go away. I just wanted to find a provider who would listen to me.



Why Get a Second Opinion?
  • to confirm a new major diagnosis or major treatment decision, such as surgery
  • you aren't getting better on your current treatment plan
  • you aren't satisfied with your medical provider or medical management
  • to compare all treatment options 
While waiting for my second opinion, I did a lot of homework and made some changes to my lifestyle. I altered my diet, cutting out foods that I felt triggered inflammation and started using CBD cream on my aching joints. I also continued to work out, modifying as my symptoms allowed. I went to see my internist for a different perspective. She agreed with my theory that the shingles vaccine most likely triggered my lengthy flare. While suggesting I avoid the second dose of the vaccine, she also confirmed the plan to obtain a second opinion.

The new rheumatologist I saw listened to my story and my concerns. I didn't feel rushed and she asked a lot of questions about my symptoms. She spent a lot of time with me and did a very comprehensive exam. This methodical approach was very different from the drive-by visits I was used to.

Her approach to RA is 180 degrees different from my previous rheumatologist with less reliance on testing and more emphasis on symptom management. This is how I treat my patients and while testing is important, I've learned that testing is only one faction of disease management. Currently, I'm feeling good and don't need a change in my treatment plan, but I want to have a physician who will listen to my concerns and not dismiss them simply because my 'numbers look good'. I loved my former physician's personality but I appreciated my new rheumatologist's attention to my symptoms and my concerns regarding my inability to participate in my activities.


Regardless, I left my visit feeling unsettled. Was I betraying my previous rheumatologist? After all, she's the one who aggressively got my disease under control. I wasn't sure if I should make the switch. How can 2 specialists approach disease management so differently? What to do?

I asked myself a few questions:
  • Was the new rheumatologist's approach to my illness wrong? Or just different? There are clinical guidelines for most chronic conditions; they are subject to interpretation. In addition, her focus on my symptoms instead of test results was refreshing. I found reassurance in the fact that her approach is the most widely used and validated form of disease monitoring
  • Did she listen to me? Yes. Not only did she listen to me, but she asked me many different questions about how I was feeling. I felt that she heard me. Instead of telling me how I should feel, she acknowledged my symptoms and my concerns. Subtle difference, but important.
  • Was I feeling uncertain because I couldn't read this new rheumatologist? I'm pretty good at reading people, but this new doctor would be a winner on the World Poker Tour. She was very serious and thorough with her questioning. There was no small talk. My previous rheumatologist has a big personality and I felt like I "knew" her. Do we need to feel like we "know" our providers? 
  • Most importantly, did I feel that she cared about me? I did. She provided validation that yes, my extended flare was most likely due to that shingles vaccine. She expressed concern about the number of times I took steroids during that flare. I felt like I could call her if I was starting a flare and she would see me. But she's definitely not warm and fuzzy.
  • Did she respect my medical background? I'm not sure. I did discuss with her my use of CBD cream, which she commented about the lack of supportive studies on its effectiveness. We also discussed one of the medications I take, which I asked my previous rheumatologist to start because of its benefits on pain in patients with arthritis. Again, she cited the lack of evidence. She does have a nurse practitioner in her practice, so that is encouraging to me.
Time will tell if the new rheumatologist is the one for me. I understand that I'm probably an unusual patient for her--there aren't very many women my age who are as active as I am, much less with RA! I did acknowledge that to her as well and that made her smile. For now, I'm feeling well and nothing will change with my regimen. The real test will be how she treats me when I'm flaring.

How do you decide to get a second opinion? Which way do you go? /via @oldrunningmom @curearthritis #runchat #health #chronicillness #rheumatoidarthritis

Have you ever sought out a second opinion from a medical provider? Would you be willing to share tips that helped you make the decision to stay with your current provider or go with the new one?

I'm linking up with Kim and Zenaida for Tuesday Topics.



48 comments :

  1. All tough questions that I'm not sure anyone besides you can answer. The concept of treating symptoms vs test results is an interesting one. I do think there is power in test results.

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    1. I agree, but think that it's important to keep in mind that test results are only part of the equation.

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  2. Good questions and tough decisions. Cost can be another consideration if your insurance won’t cover a second opinion. The specialists I’m seeing now aren’t on my preferred provider list, but I can cover the extra co-pays for coordinated care (they’re all associated with the same hospital and board certified on the right areas).
    A friend thinks the shingles vaccine made her sick - she had all the reaction symptoms for a few days. I’m going to ask my GP more questions before I get it, but since my daughter had shingles I was planning to get it.

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    1. I'm fortunate to have PPO insurance and can see specialists that I choose. It's a freedom that a lot of patients don't have. I know I'm fortunate!

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  3. I can understand why you might feel like you are betraying your previous doctor, but you have to do what is best for you. I would definitely say that you made the right decision but seeing another doctor to get a second opinion. The most important thing is that you feel better!

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    1. It's too bad I can't combine the good qualities of both into one specialist! LOL

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  4. I love my doctor, but if I had an ongoing health issue, I would get a 2nd opinion in a heartbeat and I think my doc would be supportive of that. By seeing the 2nd doc you're getting a whole new perspective on your illness and treatment, nothing wrong with that. I'm pretty shameless about cycling through providers if anything is off in the relationship, like if our personalities don't gel or if I feel like they aren't listening to me. Health is too important.

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    1. 100% agree and re-reading my posts from earlier this year was a great reminder of how yucky I felt. I'm glad I made the switch. I like what you said about getting a whole new perspective. Sometimes that's what we need!

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  5. Your analysis on when to get a 2nd opinion are very helpful. I think you did a wise move to get a 2nd opinion - your new rheumatologist seems to be a good listener and seems to have an analytical approach, despite relying less on testing. Personally, I feel more comfortable with a doctor who is not warm and fuzzy. For sure you will get good treatment if a new flare should happen.

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    1. I'm pretty warm and fuzzy with my patients but I work in pediatrics! I agree with your analysis of my new rheumatologist. We'll see how things go.

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  6. This is a tough question that you obviously have put a lot of thought into, Wendy. You will figure it out. Trust your instincts. When I was dealing with my hamstring issues, I did get a second, third, and fourth opinion when I didn't feel as though I was making any progress with healing. My family doctor listened to me, but she did not have the knowledge to really help me. I felt the chiropractor/ART guy I went to didn't really listen. I felt the say way about my PT. The orthopedist I finally found (who was also an Ironman himself) not only listened to me, he had the expertise needed to help me. I hope you find the right combination too.

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    1. I don't want to ever feel like I did earlier this year, flare aside, it was the dismissal of my symptoms that really upset me. I have to keep reminding myself of that. I'm content to forge ahead with the new provider and see how she does when the going gets tough.

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  7. This is a question I have been pondering for awhile as well. My rheumy lets me be in the drivers seat, not necessarily a good thing. He does listen to what my concerns/symptoms, then asks me what I think. How am I suppose to know-a little frustrating. I'm also in a flare up that started in July, most likely triggered from running a 50 miler. It took long and high does of prednisone to get calm it down. Xeljanz quit working and on I've just started on Humeria. If consider looking into Integrative Health and Medicine. My running is also on the back burner. A 5K seems HUGE at this point :( .

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    1. I feel you. I've been feeling so good...until yesterday. I woke up with a flare and I only ran 6.2 miles on Sunday. This worries me. Damn disease. Let me know what you decide to do. I hope your flare goes away soon.

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  8. It's so hard to find the right dr in today's world of drive by drs. I always say, though, that a good dr will welcome a second opinion, not be threatened by it.

    In the end, however, it's your body, and therefore it's not about dr, but about you. A dr who actually listens to you -- whether or not they agree -- is worth their weight in gold. So many drs have God syndrome, rather than viewing the patient/dr relationship as a partnership, which it truly should be.

    You know I'm much bigger on anectadotal than scientific proof, and so I am most likely a dr's nightmare as well. Again, though, it's YOUR body. Only you know how it feels, how treatment is working, and the buck stops with you.

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    1. I'm all about conventional treatments, but I also utilize complementary medicine that has evidence to back it. I do not at all condone anecdotal decisions regarding treatments--in my practice, I deal with a lot of anti-vaccinators who base their decisions on anecdotes. A very dangerous practice with real world consequences.

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  9. You and I, we keep sort of walking similar paths. I see my MO's PA today for that heart rate spiking that started about two weeks after starting tamoxifen. It's been three weeks off the med, and while I'm not back to normal, I also know that this drug has a long half life (and I'm still experiencing very common side effects).

    So today will be interesting in that I'm sure I'll be told this heart rate issue isn't from the drug . . . and yet I never had this happen before. I have years of heart rate data from my Garmin to show that.

    Gah. I hate this.

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    1. I'd bring that Garmin data. I get so frustrated with providers who discount patients' symptom reports. Maybe your PA could send you to cardiology so you can wear an event monitor! So sorry this is happening to you. It's tough to be a patient.

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  10. I loved my pain management doctor and his entire staff; I felt listened to and taken care of. But as it seemed to be an ongoing, possibly years in the making, thing to continue with injections, I finally went to a neurosurgeon for another take on my situation. I was inspired by his assessment to have surgery, but oh man, I felt so bad when I had to call my pain management place and cancel my upcoming appointment. Kind of like I disappointed them.

    It's all a crapshoot, this medical thing, but you have to go with the person you think can help you the most. And it's ok to pivot (PIVOT!) occasionally.

    Side note: I had my first Shringrex vaccine in June and was so sick that I haven't been able to bring myself to get the second injection. I'm finally feeling better after months of nerve pain and knowing that I'll bring on a week of feeling crappy is just not appealing.

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    1. I'm definitely not getting that second dose. I figure I'm partially immunized and that's going to have to do. The consensus is that if you had a bad reaction to the first dose, the second one will be worse...

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  11. I sought out a 2nd opinion when I tested positive for a specific GI condition for which there are specialists. My "general" GI doctor was nice but said something like "we are up on the latest research", but I couldn't help but feel like "well why shouldn't I go to someone who specializes in THIS condition?". Talk about feeling self-conscious about "betraying" them. They didn't make me feel great about it, but I'm still glad I did--it's MY body, MY problem, and wouldn't they do the same?

    About your CBD cream and "it hasn't been confirmed by medical studies" etc... I'm coming up on that a lot. I feel like regular, western functional medicine doctors usually don't want to suggest something unless it's backed by numerous confirmed studies, but as an independent person who can do your own research, if it's something relatively harmless you can go ahead and try it (I always do). We are our own best advocates and no one cares me about how we feel than us.

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    1. I know that the effectiveness of the CBD cream is not in my head because I get almost instant relief when I rub it on a painful joint. But it does not help my muscle pain after a hard workout. I find that so interesting!

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  12. I think that's a good set of questions you're asking there! It seems like you could do with someone who's in between these two. I suspect the new physician's poker face is new client face. What was your other one's demeanour when you first met them? You are your best advocate and yes, people don't know how to treat outliers but they should respect them (I was pleased when my new GP took my concerns about my heart rate on my new anti-anxiety med seriously and was keen to make sure I could keep running, even though not everyone she sees with anxiety is a runner, obviously, for example). Keep on asking the questions!

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    1. New client face, yes! I think you hit the nail on the head. When I reflect back on the visit, I love how much I felt heard.

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  13. I have gotten to the point that I just don't trust first impressions. I have been to so many health care professionals that I thought were great and were going to help me and then I get treated later as if they have no clue what is going on. It is frustrating. I would do a couple of follow-up visits before I made a final decision. It is important to be heard though and communication is key. I feel like a really good practitioner is going to respect the fact that you know your body and consider your input during any kind of treatment.

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    1. Oh for sure, I'll give it time. I'm grateful to have such a sharp internist that I can bounce things off of.

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  14. Uffda, that is a tough spot to be in especially if you have had a long relationship with your doctor. However, you are your best advocate about your health. If you feel you are not being heard, you probably are not. In which case, a second opinion is always a good idea.

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    1. It was crazy, being told that I was fine and that I had fibromyalgia (on a portal message, no less!) when I didn't have any symptoms of that disease!

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  15. I would definitely get a second opinion if it were affecting my running and my doctor wasn't listening to that! Most doctors who aren't runners don't get how vitally important it is to those of us who are. They don't understand all the emotions of someone who cannot run. It's important that you have a doctor that respects all parts of your life and listens to you like you said. I think you made the right choice. And who knows, maybe you will get to know this new doctor and you will like her? She could just be an introvert and not open up to people right away.

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    1. I have definitely experienced difficulty with doctors regarding running, even prior to being diagnosed with RA! You make good points and I think you're probably right!

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  16. You raise so many good questions. At the end of the day I think being heard by your doctor is so important. I also think the approach to treating the symptoms vs just consider test results is an interesting approach. I don't dismiss testing, but again, it's good to have a doc who hears you when you discuss your symptoms.

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    1. I think testing is just part of the equation. It's concerning to me that my symptoms were brushed off based on labs alone.

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  17. Only you know what is best for you. Change is good and it looks like the the new doctor has a different approach and mentality. But, again, only you know what is best for you. The bottom line though is that you feel better! Keep us posted.

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  18. As a Dr's daughter, I have always been a big fan of 2nd and even 3rd opinions for major situations. I say what do you have to lose by trying something different for a few months? As you have shared, your symptoms do continue to flare up and knock you off your game. Maybe trying something new might really help.Looking forward to following along

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  19. I hope you find that the new doctor provides the answers and relief you need! It's always worth it to have a second opinion, at least from my perspective. You ultimately know if something is right or not.
    I saw one gyn for years who treated my chronic pelvic pain by just telling me to take the pill more and more continuously (until I was on it continuously for four years straight and felt miserable because of it), even though that didn't help. So I changed doctors to one who listened to me - and she discovered I had adhesions binding my intestines to my pelvic wall and removed them. If I hadn't had a second opinion, I would probably still be in pain and possibly not have my daughter!

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    1. I hear stories like that all the time--in fact, sometimes parents bring their kids to me for a second opinion! Glad to hear you had a good ending to your story!

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  20. I've been on the fence about switching family doctors, but in my community there's not much of a selection. Also, it would be awkward. Everybody knows everybody else, and my doctor is someone I went to high school with. It was her partner that blew off my flaring knee two years ago (which wound up being staph). I haven't yet gotten the Shingles vaccine, and was mildly freaking out that I would wake up with the stuff before MCM...I have hyper-sensitive skin, so if the Shingles were to show up on me, it would be nasty. Currently, I'm on a wait list for it, though.

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    1. I think the hard part about switching providers is that personal aspect. You have to put your health first--I mean, look at what happened to you!

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  21. I think second opinions are important for any major medical decision or situation certainly one like yours especially if you're not satisfied with your treatment. It's great to like your doctor, but you shouldn't make medical decisions based on that. I hope that your new doctor lives up to your original opinion.

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    1. I think the number one requirement for a good provider is that they listen to the patient!

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  22. It's so hard to know what to do. I remember how I used to feel that doctors just knew what to do. Now I realize there are so many ways to handle things and a second opinion is never a bad idea. I hope you can figure out which way to go. It does sound like a hard decision.

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    1. It still feel like a hard decision! I hope I made the right one. Time will tell.

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  23. I don't think it ever hurts to get a second opinion and it sounds like you did it for the right reasons. When you have any doubt about a current health care provider, looking for a different approach from another provider can help you assess the positives/negatives of both.

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  24. I think it's not only great that you sought a second opinion, but if there is any doubt at all I think you SHOULD seek out a second opinion. I am the Queen of second (third? fourth?) opinions and I will absolutely not accept it if I'm not taken seriously. I have been to several physios, neurologists (the first one I even wrote a scathing email to the hospital administration as she may be a brilliant doctor but absolutely HORRIBLE with people), even an RA specialist. I went to a different clinic finally for my foot, and I'm still having issues and they are about to hear a whole lot from me next Friday when I go back.

    I'll never stop fighting for answers or just accepting my fate. And if it turns out your new rheumatologist lacks somewhere, then I say don't stop until you find the right one.

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    1. You are so right! For me the hard part is the logistics. For example, I am out of medication. My old rheum won't fill the prescription and my new one has to figure out my insurance. Ugh.

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