say that again…

Sorting through the fallout following a significant misdiagnosis

I’ve tried penning this post in my mind since I heard the news. I wanted to get everything sorted out in my own head before sharing anything. I wanted to get the words just right. And then I accepted reality…I don’t know if I will ever be able to sort this all out. I don’t think I’ll ever get the words just right. Say that again…

Five years and (almost) five months ago, I sat in a neurologist’s office with my husband by my side and heard the words… “You have Parkinson’s Disease.”

Five days ago, I sat in a neurologist’s office with my husband by my side and heard the words… “You don’t have Parkinson’s Disease.” More accurately, the neurologist said, “Have you seen the good news? It was uploaded into your patient portal last night.” “Your DaTscan is normal. You don’t have Parkinson’s Disease.”

so…what is a DaTscan

The Parkinson’s Foundation shares:

In 2011, the FDA approved the use of a scan called a dopamine transporter scan (DaTscan). A DaTscan is an imaging technology that allows visualization of the dopamine system in the brain. It is similar to an MRI, but looks at the “function” of the brain rather than the structure.
A DaTscan involves injection of a radioactive drug that is then measured by a Single-Photon Emission Computed Tomography scanner (SPECT scanner). The SPECT scanner measures the levels and location of the drug in the brain.
A positive DaTscan can differentiate PD from Essential Tremor (ET) as there is no dopamine deficiency in the latter. Although the diagnosis is ultimately based on your history and physical exam, the DaT scan is used to complete the picture.

I never had a DaTscan…until last Thursday. DaTscan imaging is very expensive and is usually only used when there is a question of Essential Tremor vs Parkinson’s Disease. My neurologist was certain that my history and symptoms, along with my physical exam, indicated Parkinson’s Disease. He did not feel that a DaTscan was necessary.

Disclaimer: I’m going to try to be as careful and respectful as I can with the way I share the following information. Because…I am not happy with my neurologist and haven’t been for the last two years. I have been waiting for almost a year for a referral to a new one. But…in the earlier days of my diagnosis…I relied on him for all of my information and guidance.

so…how is parkinson’s (mis)diagnosed

Parkinson’s Disease is a clinical diagnosis made after a complete review of the patient’s history and symptoms and a physical exam by a neurologist.

The Parkinson’s Foundation also shares:

To consider a diagnosis of Parkinson’s disease, a person must have bradykinesia (slowness of movement). In addition to bradykinesia, a person must also have one or more of the following:

* Shaking or tremor in a limb that occurs while it is at rest
* Stiffness or rigidity of the arms, legs, or trunk
* Trouble with balance and falls

Okay…I can rationalize that he was beginning to think Parkinson’s. I was having all of those symptoms.

However…I was also experiencing and reporting additional symptoms that he brushed off. If it was not a tremor, an unusual cadence in my gait, or an injurious fall…he would not address it. At every appointment, I mentioned my insomnia. He said he didn’t really think it was Parkinson’s related…the end. I also mentioned the tremendous pain I live in every day. In his opinion, not Parkinson’s related…the end.

In the past five years, I have had the opportunity to speak with many people with Parkinson’s. The majority of them will tell you that they do indeed have insomnia and pain. And, even if my neurologist didn’t want to believe that those symptoms were Parkinson’s related…it didn’t mean I wasn’t having them.

THIS is where I feel he…and my entire health care team…really dropped the ball. If those symptoms, according to him, were not Parkinson’s related…then what were they? What could they be? And why…in January 2021…did everything escalate so quickly? Why did my condition, which was frustrating and limiting yet manageable, deteriorate so rapidly?

if

If he…if anyone…had only dared to think outside the box or dig a little deeper…

If he…if anyone…had just seen me, had just heard me, had just believed me…

I may have found out at least two and a half years ago, maybe even five years ago, that I didn’t have Parkinson’s Disease. I had…I have…Functional Movement Disorder.

what is functional movement disorder

Let’s start with Functional Neurological Disorder (FND). Functional Neurological Disorder is a problem with the functioning of the nervous system and how the brain and body send and receive signals.

Functional Movement Disorder (FMD) falls under the FND umbrella and is indicated when the disconnect between the brain and the body affects the way your body moves.

But, Parkinson’s Disease is also marked by a disconnect within the signals exchanged between the brain and the body. However, scientists know that the origin of that disconnect in PD is within or among the dopamine-producing neurons in a small area of the brain called the substantia nigra.

Functional Movement Disorder is not caused by structural brain damage, but by a functional change.

The DaTscan, done just last Thursday, was instrumental in differentiating between the two in my case.

So, where does it come from? Why does that functional change occur?

Although FND is listed as a rare disease, it is the second most common reason for a neurological outpatient visit after headache/migraine. The mechanisms which cause FND continue to be poorly understood despite their prevalence within neurological clinics. But researchers do note that Functional Neurological Disorders are often triggered, or escalated, by an illness or by physical or emotional trauma.

I never had Parkinson’s Disease.

I was misdiagnosed on November 7, 2017.

I had Functional Movement Disorder. It was in the early stages and was likely manageable.

And then, in November 2020, I contracted COVID-19. Soon after, in January 2021, my body began its severe and rapid decline. As “highlighted” above…Functional Neurological Disorders are often triggered, or escalated, by an illness or by physical or emotional trauma.

The Functional Movement Disorder that had been misdiagnosed as Parkinson’s Disease was no longer in the early stages and manageable. Post-COVID infection, the FMD was suddenly more advanced and out of control.

how i feel about all of this

I have so many emotions fighting for real estate in my mind and in my heart that I don’t even know where to begin.

I’m ecstatic! I DO NOT have Parkinson’s Disease. I DO NOT have a progressive, neurodegenerative disease.

But…

I’m scared. I may not have Parkinson’s Disease…but Functional Movement Disorder is a very heavy diagnosis. I have a chance at getting better…50-60% of FMD patients do…but I have a very long, very hard road ahead of me.

However…

I’m motivated. I absolutely have a chance of getting better. Yes…it’s going to be hard. But…this is hard. Life…the last 3 years…has been especially hard. If I’m going to do hard…I’d much rather do the hard that gives me a shot at getting my life back.

In addition…

I’m driven. I have so much work to do. There is, just as with my PD diagnosis, not an abundance of readily-available information out there about Functional Movement Disorder. I want to change that. I know there are other patients out there that feel invisible and unheard. I want to help them. And, I will advocate until my last breath for all newly-diagnosed Parkinson’s Disease patients to have access to a DaTscan if they would like that confirmation to “complete their diagnosis picture”.

And…

I’m angry! I’ve been ignored, dismissed, and shushed for the last 3 years. I’ve been tossed around like a rag doll amongst my own providers because no one individual provider wanted to “take responsibility”. I’ve lost five years of rehab and therapy that might have slowed or contained the disease had it been recognized. And, I’ve taken thousands of doses of medications that I never needed. (Respectfully, please do not use this space to voice your opinions in regard to medication and treatment choices. Every patient makes the best decision for themselves with the information and support they have at the time.)

so…now what

Cleveland Clinic and my neurologist, Dr. Shuaib, use a multi-disciplinary approach for the treatment of Functional Movement Disorder. I will be working with a Movement Disorder Specialist (neurology), a Behavioral Health Specialist (psychology), and a Neuro-PT (specialized physical therapy w/potential occupational therapy).

I met each of the members of my team last week while I was at Cleveland Clinic. And, every single member of that team was phenomenal!

Unfortunately, they are nearly eight hours away. Fortunately, my Movement Disorder Specialist can monitor with regular telehealth visits and occasional in-person visits. My Behavioral Health Specialist will monitor via telehealth, as well, and is prepared to collaborate with my therapist here at home. The Neuro-PT is more challenging. This obviously has to be in person and someone with additional training and education in FMD would be ideal. But, I have already been able to reach out to some potential facilities and I’m hoping one of them will be the perfect fit.

I shared earlier that 50-60% of FMD patients do improve…but it is a very long, very hard journey.

For the last five years, my brain and my body have not been sending and receiving signals effectively. I have to completely retrain all of my affected movement patterns and work to restore their normal automatic functioning. I’ve been given the heads up that the reality of FMD is…the harder someone with FMD tries to move normally, the worse their symptoms become. My neurologist warned me that there will be days I will wish I had Parkinson’s. I have also been cautioned to be prepared for the very likely possibility of permanent deficits…five years is a long time for brain/body disconnect.

always make it meaningful

So many of you have reached out and asked how my week went at Cleveland Clinic and if we were any closer to answers. I know this is a lot of information and I can only hope that I organized it in a helpful and educational manner. I still have so much more to learn and share. And, I hope to continue my advocacy for Parkinson’s Disease awareness even as I pivot my immediate attention to Functional Movement Disorder.

Thank you to each and every one of you that continues to follow my journey and include me in your thoughts and prayers. If you’re interested in reading more about Functional Movement Disorder, this website is a great place to start.

As I sign off…I found this short blurb in my hours and hours of research.

Functional Movement Disorder’s primary manifestations are tremor, dystonia, gait disorder, or other abnormal movement. 
The diagnosis is often delayed or missed, and prognosis for complete remission is generally poor.

So, that means…lucky me!

Just Shake It Off still works.

And…Functional Movement Disorder is also an ugly, “mean” diagnosis and I will make it meaningful!

My “brand”, as my daughter Ellie called it, is still intact…even if nothing else is right now.