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The reality is that getting a diagnosis simply isn’t enough; you need a treatment plan as well.

Your diagnosis isn’t the entire journey, but an essential step in your management process.

Without a diagnosis, you and your doctor are guessing with nothing firm to work around.

Once you have a diagnosis, though, you should then have an understanding of what is happening, why it’s happening, and at least some suggestions on how you may be able to manage it.

I want to help you understand what your treatment plan is, who you need to work with to create it, and how you can use it to help confirm your diagnosis and better manage your condition.

What makes a good treatment plan?

The first and most basic thing is that a treatment plan includes not only medication, surgery, and other prescribed options, but also suggestions for how you, as the patient, can help manage or treat your condition(s).

This may include dietary changes, behavior modification, taking vitamins or other over-the-counter treatments, or seeking out complementary care like massages or acupuncture.

Also, while there are recommended treatments for different conditions, each patient should have a unique treatment plan, based upon their own personality, the severity of their case, and their own needs and preferences.

As an example, there are multiple types of medications to treat depression. In most cases, different medications need to be tried before a patient finds a treatment that actually helps them effectively.

scrabble tiles spell out 'eat less sleep more'
Sometimes treatment plans are mostly common-sense suggestions,;other times they are more complicated.

Part of managing a person’s depression is recognizing that it often is a guessing game until the patient finds a medication that actually helps.

That also requires recognizing how long it takes for a medication to be effective, so that the medication is tried for a reasonable period of time in order to truly test its effectiveness, as opposed to stopping before it can take effect, or continuing the medication when it clearly isn’t having the desired impact.

Also, there are often habits or decisions that can greatly influence one’s health, but they often require a great amount of commitment or consistent practice over a long period of time.

For example, a friend of mine was diagnosed with diabetes, and her doctor prescribed some medication to help, but informed her that unless she made radical lifestyle changes, her condition was only going to worsen.

She did her research and learned about a radical dietary change that was proven to significantly reduce blood sugar levels.

Due to these choices and her commitment to them, she did not need to take any medication and her blood tests no longer indicate diabetes.

However, if she had not committed to this choice, she likely would be on medication to manage the condition. This was the right choice for her, and allows her to have a medication-free life with no diabetes symptoms or complications as long as she generally sticks with her diet.

I’m going to lay out my partner’s and my respective treatment plans to help show the details and significance involved in a treatment plan—and how they can change over time.

left side holds a picture of Alison gazing levelly at the camera.  To the right, white text reads "Medical care decisions feel overwhelming?" and in smaller brown text "Click here to learn about my medical care coaching".  The far right of the banner holds the Thriving While Disabled logo

Al’s treatment plan

My partner Al has learned that he has pernicious anemia, which requires regular hematologist appointments (every 3 to 6 months for now), regular endocrinologist appointments (at least annually, possibly every 6 months), and regular gastroenterologist appointments (every 6 to 12 months).

Pernicious anemia is a blood disorder (hence the hematologist) that in his case caused severe bone weakness (which the endocrinologist checks), and increases the risk of stomach cancer and other absorption issues (the gastroenterologist keeps track of that). He will need an endoscopy every few years to check for stomach cancer.

Al needs to eat more calcium and vitamin D, maintain a healthy diet, exercise regularly, and get the appropriate blood tests and bone scans as needed.

He is also taking a medication to help rebuild his bones and gets a monthly B-12 shot.

That combination of lifestyle changes and medical appointments is his full treatment plan, and his self-care routine is the most impactful part—the doctors are monitoring his system to catch any additional risks or problems as early as possible.

We also know that the medication he takes for his bones has long-term risks, so we know that he’ll need to stop that medication, at least temporarily, at some point.

My treatment plan

The doctors that I need to see regularly are my primary care physician, my neurologist (actually, I have two at the moment, an FND specialist and a headache specialist), my psychologist, and my gynecologist.

Functional Neurological Disorder (FND) is a neurological condition, so in my case, the most important thing is checking in with my FND–aware neurologist whenever I need to.

When I first started seeing him, it was every couple months, now it’s every 3 to 4 months, and I’ll likely be able to step it back to closer to 6 months if my symptom shifts decrease.

I also have just changed my primary care practitioner, who gives me an annual wellness check and who I’ll see when and if I get complications from a virus or any issues like that.

I also see my gynecologist annually for my wellness visit with her. I have had a couple of HPV infections, one of which caused precancerous cells.

While it appears that the cold cone biopsy I had in 2016 removed all those cells (and I appear to be HPV-free), the whole experience, while slightly traumatic, has reminded me of the importance of regular wellness visits.

With the way my FND symptoms work, I often end up searching for additional specialists depending on how my FND symptoms express.

Each substantially different symptom or set of symptoms may be FND, or may be signs of a completely different condition.

So, besides checking in with my neurologist most times when I have new, strange symptoms, I’ll also check in with a specialist in whatever’s not working right.

Part of my medical treatment is searching for clues on the cause of my symptoms. Maybe it’s FND?

For example, I have an ophthalmologist I normally see every few years (I’ve needed glasses most of my life), but when my eyes went out of focus for a few days and then started occasionally darting around in my head, I checked in with the ophthalmologist to make sure that he didn’t see a problem with my eyes themselves.

So far, the problems have turned out to be FND symptoms, but I need to remain vigilant because it’s always possible the next problem will be caused by something else.

I also need to keep anxiety to a minimum because stress will make my symptoms worse, so I recognize that I have a plan, then follow through with it when new symptoms occur. I also see my therapist weekly to help me with stress management and planning.

My treatment plan includes seeing the right doctors for my symptoms, meditating and exercising regularly, healthier eating, and regularly listening to my body to determine how much I can safely do on a day-to-day basis. When I can, I also get massages.

I see my gynecologist, primary care physician, and neurologists at least annually. I take birth control, allergy medication, Gabapentin (for the migraines), and antidepressants daily, as well as a few vitamins, the most important being B-2 (riboflavin), which my neurologist recommended to reduce headaches.

I also am getting botox injections for my migraines every three months, and am currently focused on managing or ending the migraine headache I have had since last August. It has gone down considerably with treatment, and I now have a few hours at a time without a headache, and it’s generally pretty low-intensity, a 1 or 2 on a pain scale.

I also see additional specialists when certain symptoms seem especially severe or treatable. I participated in the MoRe (Motor Reprogramming) program in 2016, which greatly improved my symptom management, and have seen a pelvic floor PT multiple times. I’ve found that treatment very helpful for my urinary symptoms, but when my FND is the primary cause, there’s only so much help she can give me.

I recognize that I only have so much energy, and so I allow myself to go through phases of focused treatment on particular symptoms, and periods where I just focus on living my life the best I can.

This does mean that I am especially responsible for the adjustments in my treatment plan.

I’m very grateful to have doctors who respect my autonomy and drive in this, and support my choices in this matter.

Update: I’m now getting annual mammograms and getting a colposcopy every six months. My migraine treatment has shifted to an injectable CGRP inhibitor and an oral CGRP inhibitor. My FND-aware neurologist passed away, and the neurologist I was seeing to replace him is moving on. I have PT exercises to do for my pelvic floor.

left side holds a picture of Alison gazing levelly at the camera.  To the right, white text reads "Medical care decisions feel overwhelming?" and in smaller brown text "Click here to learn about my medical care coaching".  The far right of the banner holds the Thriving While Disabled logo

The psychological importance of setting your treatment plan

Your treatment plan can (and I argue should) be viewed as an agreement between you and your doctor (like a contract) on how best to manage your condition.

Going back to the base idea of your doctor being your partner in care, rather than the person dictating your treatment, this plan is something that you and your doctor co-create, based on their diagnosis, your self-knowledge and preferences, and the available treatment options.

You should be respectful of their knowledge, and they should be respectful of your self-awareness.

For example, Al’s endocrinologist strongly recommends that he focuses on eating his calcium in his food rather than taking calcium supplements as that is better absorbed.

However, he won’t eat yogurt or sour cream, so he needs to be sure to drink milk and eat cheese most days to get that calcium in.

He also has calcium supplements so he can take them on the days he doesn’t eat his calcium. If the doctor had insisted on him eating yogurt (despite his dislike of it), there’s no way he would do it.

A person holds their dog next to a sign that reads 'no pets'
We’re more apt to want to break the rules that other people make than we are to want to break our own rules.

If you have a plan that your doctor made, it may not be very enticing to follow. It’s just suggestions somebody else made for you.

However, if you have bought into the plan and have been able to make adjustments to it, then it’s easier to do and accept.

Your choosing the better options for you means that you’ve empowered yourself to carry through (like my friend did by adjusting her diet), and if you have those moments of doubt (everybody does), then you can remind yourself that you made the choice to help manage your condition in this particular way, through these particular steps.

Taking ownership of the challenge often makes it easier to stick to the treatment plan. You are actively choosing to adjust your habits to make your life better, rather than following somebody else’s instructions to do something that might help.

The energy is very different, and the logic is different. You are believing in yourself and showing that belief by following the plan, rather than blindly doing what somebody else instructed.

left side holds a picture of Alison gazing levelly at the camera.  To the right, white text reads "Medical care decisions feel overwhelming?" and in smaller brown text "Click here to learn about my medical care coaching".  The far right of the banner holds the Thriving While Disabled logo

Where else can you get help with your treatment plan?

What do you do if your doctor isn’t listening to you, or gives you the diagnosis but doesn’t have the time or inclination to develop a treatment plan with you?

All is not lost.

While you can’t necessarily change your prescriptions without your doctor’s permission (and you shouldn’t, either—you need a competent medical professional for that), you can do research on your condition on your own, and learn what the recommendations are for managing your condition.

I honestly recommend some additional research even if you and your doctor do have a good plan, as they may not be aware of the newest studies or the most recent findings.

There are a lot of health conditions out there, and it’s not physically possible for your doctor to keep up on every condition all the time.

The best information sources are often fellow patients and resource groups on your condition.

While there are occasionally some groups or folks with a less-than-healthy mindset, most of these groups gather up-to-date information and are great resources in terms of exercises, diet, and other lifestyle changes that may be helpful in managing your condition.

Five disabled people of color with canes, prosthetic legs, and a wheelchair sit on a rooftop deck, laughing and sharing stories. Greenery and city high-rises are visible in the background.
Often the best advice you can get comes from others who have experienced the same issues as you have! (Photo by Disabled and Here, www.affecttheverb/disabledandhere)

Some of these groups also discuss alternative therapies, medication resources, and surgical options, depending on the condition.

Always use your best judgement and double-check the information that you can.

Do your due diligence, and make sure that what you are reading makes sense and compares reasonably well with what your doctor has told you.

If there are major or severe differences in information, please check it against another reputable source and discuss it with your doctor.

Sometimes there are major changes in the understanding of how conditions work. More often, though, people perpetrate fraud or disinformation or pseudoscience.

Find groups that you can trust, and double-check anything that doesn’t sound quite right to you.

Very often, you’ll find the details that your doctor might not have had the time (or knowledge or inclination) to share—and those can help you consider adjustments or additions to your treatment plan.

As always, beware of fad diets or dubious “health” products, and look for things that complement your plan rather than replacing it (for example, look for exercises that might be particularly good to do, or foods to add/subtract from the recommended diet, as opposed to completely changing your exercise plan, or trying an extreme (or extremely different) diet change as compared to your doctor’s recommendation.

You deserve to have a solid plan for understanding and managing your condition, especially once you have a firm diagnosis.

Even if your diagnosis is less certain, there are usually things you can do to either help affirm or disprove certain theories of diagnosis, and there are often things you can do to contribute to your overall health and well-being (like finding a better exercise or dietary balance or improving your sleep habits).

You deserve to feel good about the choices you are making and to make decisions that improve your health.

left side holds a picture of Alison gazing levelly at the camera.  To the right, white text reads "Medical care decisions feel overwhelming?" and in smaller brown text "Click here to learn about my medical care coaching".  The far right of the banner holds the Thriving While Disabled logo

You deserve a quality treatment plan—ideally created with your doctor

Your doctor is supposed to be your expert on the diagnosis and treatment of your medical issues. That means that, ideally, your treatment plan is something you develop in partnership with your doctor(s).

Your treatment plan should not only include prescribed treatments and/or observation and recommendations by appropriate specialists, but also what you can do at home to help you better understand, treat, and manage your condition.

While surgery, medication, and other treatments or extra specialists are important parts of your treatment plan, your treatment plan should also include dietary changes, physical fitness suggestions, vitamins, or alternative therapies that could also help you.

If your doctor does not provide you with enough suggestions, or you wish to further explore your options, you can find additional information from nonprofits focused on your condition or from support groups consisting of people who share your diagnosis or symptoms.

Again, ideally, you should be able to work in partnership with your doctor, and you should not follow suggestions that run counter to your doctor’s advice, but you definitely can learn from others and use that information to allow you to ask appropriate questions at your next appointment. Quality doctors will discuss your options with you—and if your doctor won’t, it may be time to search for a doctor who better meets your needs.

Pinterest image: In the upper left corner of the picture is the Thriving While Disabled logo, while the upper half is a picture of a doctor discusses medical information with a teenager and her father The lower half of the image reads 'Creating your treatment plan: a powerful tool for your wellbeing',
Pinterest image: In the upper left corner of the picture is the Thriving While Disabled logo, while the upper half is a picture of a doctor discusses medical information with a teenager and her father The lower half of the image reads, “Creating your treatment plan: a powerful tool for your well-being.”

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  1. I had a really good plan at an integrated clinic a few years ago that included physiotherapy, dietetic input, occupational therapy and more. It’s such a shame these kinds of treatment plans seem few and far between.

  2. Were they able to give you suggestions on what to do after those supports ended? I don’t mind having support with education and then being set loose for a while once I understand the process, but it is really frustrating to just lose support because the time is up. We deserve to have support as long as we need it!

  3. I too have been diagnosed with FND. My neurologist and psychiatrist came together to do so. I have seen my neurologist since 2019 because I lost my insurance. He told it was mostly psychological anyway, did give me meds for involuntary body movements.

    1. Nicole – while FND definitely has a psychological aspect in many cases, there definitely are some treatment options worth considering. I just recently finished a post on the intensive PT/OT plus programs that are run around the world to treat FND(https://thrivingwhiledisabled.com/functional-neurological-disorder-treatment-programs-are-worth-the-effort/). I highly recommend looking into them.

      Also, having insurance is so vital! Have you been able to get any coverage since then? I don’t know your financial situation, but Medicaid is often an option if you’re low-income – or if you’re ineligible for that coverage, the ACA has led to the creation of marketplaces in most states where you can select a low-cost insurance plan. Nobody should be uncovered, though I’m aware that that’s not always the case.

      I hope you’re doing better now – and happy to discuss things with you further!

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