mug with writing on it 'Everyone is entitled to MY opinion'
Spread the love

If your condition is complicated, you will likely need to see a variety of experts.  Somewhere on that journey, a doctor, most often a specialist of some sort, will recognize your symptoms and give you a diagnosis.  Is that diagnosis enough?  Are you set now?  Or do you need to go deeper down the rabbit hole and get some confirmation? 

Today, we will dig into deciding if you need a second opinion on your condition.

If you see a doctor whose testing methods are very open to interpretation, you will likely want a second opinion.  I have had some pretty unpleasant misdiagnosis experiences that should give you an idea of what to avoid if you can.  If your experiences line up with any of them, you will want to get a second opinion!

If any research you make into the condition they diagnosed you with sounds tremendously different from your lived experience, you also may want to get a second opinion – especially if there isn’t an explanation of why your experience is so different!

You also want to see what actions they suggest you take – the more extreme the action, the more you want to get a second opinion before following through on their suggestion, even when it sounds reasonable.

Is the suggested treatment dangerous or radical?

If you see a doctor and they want to have you operated on, especially if no other doctors have mentioned that idea, you want to see at least one other doctor to confirm that surgery is needed.

two surgeons working on a patient
If their suggestion involves you on an operating table, you want at least one more opinion, possibly two!

There are always risks involved with any surgery, of course, so if surgery is recommended and your life is not in immediate danger(if you have, say, appendicitis, you’re being operated on by whoever is available), you have time to do some doctor shopping

And you want to.  For your own peace of mind, if nothing else. Even if their suggestion is correct, it’s possible that you’d feel better having a different doctor do the work, or meeting a second doctor may help you feel better about having the first do your surgery.

If their suggestion isn’t surgery, but another treatment that sounds extreme or strange to you, get that second opinion so you know that their plan makes sense(or learn that it doesn’t before anything permanent is done).

Also, if the doctor suggests a treatment completely different from the treatments you’ve found when doing research, you probably want to see a different doctor to double-check if the treatment is legitimate – especially if that treatment may have severe or long term effects. Since doctors sometimes fail to mention all the possibilities, you do want to do your due diligence.

Is this doctor the only one who does this treatment, or is otherwise selling you something that can’t be ordered through a pharmacy?

While there are some very unique and helpful treatments out there, the idea of this doctor having an utterly unique treatment would raise red flags for me. 

I would want to do more research(including at the better business bureau) to make sure that the doctor and treatment are not some form of scam.  They may be legitimate, but that kind of claim I would want to double-check.

Did they give you a useful diagnosis with a treatment regimen?

Terms like ‘diagnosis of exclusion‘ are indicators that the doctor doesn’t have proof of their diagnosis. 

A diagnosis of exclusion is made when the doctor has run out of possible diagnoses – if you don’t fit any of the boxes the doctor knows how to tick, then you’re given a diagnosis of exclusion – it doesn’t fit their other definitions, so it must be this other thing.

If that word is used in your diagnosis process, you definitely want to dig in and look for a more experienced or more focused diagnostician. If you are seeing one of the experts, check in to see if there are any confirmatory tests.

Idiopathic is a nice way of saying ‘we don’t know why’ – which usually means that if you search, there’s a deeper answer.  Any diagnosis with ‘idiopathic’ in the name is an indicator that you don’t have a full answer yet(in some cases, that is all medical science has though).

packets of pills
Have you and your doctor created a plan for what you need to do or take regularly in order to get better or manage your symptoms?

A related term to be wary of is ‘essential‘, as it generally means ‘on its own’ – for example, some people have essential tremors.

These tremors do not appear to be related to any of the usual causes for tremors or the neurological issues that may be associated with them.

Also, some diagnoses are actually just descriptions of what the body does with no explanation of why or how. 

Those diagnoses often are also not entirely useful, because they often don’t have treatments or solutions attached, or those treatments might decrease the symptoms, but not solve the underlying problem. 

For example, being diagnosed with osteoporosis means that your bone mineral density is low, but doesn’t explain why that has occurred and that why can have a huge influence on treatment.

For some people(elderly post-menopausal women in the case of osteoporosis) that explanation is enough, as it is most likely related to gender and age(extreme change in sex hormones which women experience post-menopause is a known cause of osteoporosis), but if you don’t fit the expected category, there’s almost always more to the story.

You want to know what the problem really is, so that you can make sure that the prescribed treatment is actually solving the problem, rather than managing the symptoms.  

The only exception to this that I can think of is when it comes to autoimmune disorders.  Modern medicine hasn’t yet been able to discover a full explanation, so generally, once they specify what your immune system is attacking, there aren’t going to be further details available.  

When and why Al needed a second opinion

Al was diagnosed with osteoporosis.  Specifically, idiopathic osteoporosis. It sounds like a statement, right?  In English, that diagnosis translates into ‘his bone mineral density is insanely low for his age.’ 

Osteoporosis is idiopathic(‘we have no idea what caused this’) by definition in a 38-year-old man without a known genetic issue to cause it. 

After learning he had osteoporosis it took us another eight or nine months to actually discover what the problem was(malnutrition caused by autoimmune pernicious anemia), and start treating it!    

a shot in the arm
Al’s pernicious anemia is easily treated with a monthly B12 shot!

The osteoporosis was a clue, and led us to the endocrinologist(the second endocrinologist he saw) who figured it all out!

The first endocrinologist looked at his information and suggested that maybe he hadn’t developed properly as a child.  That was when we knew we needed to get a second opinion.  

In all honesty, we simply don’t know yet if the pernicious anemia was the entire cause, or if something else is wrong too, though it is possible that the whole problem has now been identified. 

In another year or so, Al will get another bone scan and see if the treatment has helped enough that it is the full explanation – or if there is another variable in play here that nobody knows about yet.

I went through 4 neurologists and two psychiatrists to be correctly diagnosed!

When my Conversion Disorder symptoms started, I had to see multiple experts before finding one who even recognized the condition. 

The first neurologist I saw referred to my symptoms as a stress response(which was accurate but incomplete) and put me on an anti-anxiety medication, which did reduce my symptoms. I ended up going into remission(a symptom-free period) for about a year.

When my symptoms returned, I saw a neurologist who specialized in epilepsy, since my symptoms vaguely resembled seizures and we didn’t know what else to call it. 

He did a lot of testing that proved I was not epileptic but was unable to find a cause for my movements. 

When he had me hospitalized, a colleague of his recognized my symptoms as being more on par with a movement disorder than a seizure, so referred me to a movement disorder specialist, who was able to properly diagnose me. 

At the time, they needed to have a psychiatrist confirm the diagnosis. I saw a psychiatrist during my hospitalization who was clueless, and never thought to suggest conversion disorder, even though it was considered a mental illness at the time.

My movement disorder specialist worked with a psychiatrist was able to confirm that my symptoms and life history lined up with conversion disorder, finalizing my diagnosis.

Functional Neurological Disorder(the new name for basically the same disorder) only needs a neurologist to diagnose it, which is one of many reasons I am grateful for the progress researchers have made on my condition.

So, you’ve looked at your situation and decided that you need to get a second opinion. So how do you do this comfortably? This depends on your situation.

If you need a second opinion

If the doctor you saw has suggested an extreme treatment(especially a surgery or other very invasive process), you simply can tell them you’d like a second opinion before you make that decision, and then schedule an appointment with a different doctor.

When your doctor has an uncertain look like this, it’s time to get a second opinion!

If you see a doctor who is stuck, you’re likely done with them anyway. If they are making suggestions and using uncertain language like diagnosis of exclusion or idiopathic, or otherwise indicating that they have no idea what to do next, it’s pretty easy to do some research and make sure you aren’t being misdiagnosed.

If you are just feeling a bit uneasy or uncertain, or if you’re not sure if another doctor will be more helpful, just quietly make that second appointment and see what happens.

You do not need to tell them that you are seeing another doctor(and they only might find out if the new person you see requests lab results from them).

If you need a referral to see the second doctor, you may need to request that from your primary care physician, but don’t need to ask the specialist you saw.

Honestly, getting a second opinion is due diligence, so often good doctors will even mention you getting a second opinion after you see them, depending on the situation.

If they don’t suggest getting a second opinion, that’s not necessarily a bad sign, as some of the rarer or more poorly understood conditions(like FND) are only helped by second opinions from the experts in the condition.

In all honesty, an indecisive surgeon isn’t something you should want – they should feel that they know what they are doing and how to do it – you can and should look at how often and how successfully they have treated conditions like yours, and how appropriate the surgical route is for treating your particular issue at this specific time.

Also, surgeons are generally a pretty arrogant group, so may not be willing to consider you needing a second opinion. That doesn’t mean you shouldn’t get one, just that not recommending it doesn’t mean that they’ll be a bad choice.

You have the right to a second opinion

As a patient, you have the right to see a different doctor at any time and make sure that your advice seems sound. If that second opinion is vastly different from the first, you may want to seek out a third one as well.

You really need to know what your options are. Until you have a good idea of what your choices are and the ramifications each one has, you can’t make an informed decision – and your medical decisions should always be informed ones!

You deserve a correct diagnosis, and you deserve a realistic assessment of your situation. There are a lot of medical conditions out there that can be well-managed in the long term, once you know what you have and how to treat it.

Whenever possible, look for somebody who specializes in your condition(or what your condition appears to be), and look for organizations and individuals that are most likely to be searching for the correct/proper diagnosis, rather than selling you their product.

The person who best knows what is happening in your body is you!

Don’t accept ‘I don’t know’ from a doctor, no matter how nicely they dress it up. There probably is a doctor out there who can help you figure it out, or one who can guide you to the right diagnosis and treatment.

Don’t give up, just keep looking and keep fighting to make sure that you know what you have and how to treat it!

I have seen a lot of different experts for both my own treatment and for Al’s, and one of our most important lessons has been that there is always somebody out there who can figure it out.

Sometimes you need to go through a few ‘experts’ to find one who can help you, but it’s worth it to keep looking until you find them.

Being treated properly makes all the difference in the world! Just having a medical professional who understands what is happening is huge – my conversion symptoms dropped dramatically once I learned what they were.

For Al, the treatments he was getting for the osteoporosis couldn’t help much until after the doctors realized that his biggest challenge was the lack of B12, which he now has injected on a monthly basis.

Those B12 injections let him actually benefit from the treatments they originally suggested – vitamin D, calcium, and Fosamax – these treatments would have been useless if he wasn’t also getting the B12 his body needed and could no longer provide itself.

If you are uncertain and feel like you need a second(or third) opinion, please get it! You deserve it, and if you feel you need it, you most likely do! Listen to those instincts of yours and keep taking care of yourself.

Similar Posts

Leave a Reply

Your email address will not be published. Required fields are marked *