Blog 2) Orthostatic Tremor – Essentials of Advocating

(Orthostatic Tremor is a rare neurological disorder of the cerebellum, causing the inability to stand without leg tremors, feelings of instability, and imbalance with gait freezing, tremors cease when walking, sitting, or laying down.)

Blog 2) Advocating

1) Navigating for a diagnosis, solid answers, and direction for excellence in health care treatments.
2) Navigating through the complexities of your insurance.

Advocating is important towards medical care not only with Orthostatic Tremor but also for the multitudes of people who suffer from many complex disorders and chronic illnesses. I hope this particular blog will give you guidance in your path to excellent health care.
My experience with auto immunes, degenerative disc disease, and now Orthostatic Tremor have motivated me towards the necessity of being prepared and ready to advocate two separate medical hurdles;
1) Navigating for a diagnosis, solid answers, and direction for excellence in health care treatments.

Doctors are very busy, this gives us limited time to speak. A good doctor understands our time value as we understand his time value. It’s a small investment of time at great medical cost for the patient. I think we all experience pre-appointment anxiety in knowing the short time space of verbal expression for understanding. They are on a schedule. Be prepared with your symptoms and questions, write it all down.
I use my iPhone and iPad synced with a special writing app that holds all my records, test and labs results, a summary history with dates of diagnosis and treatment, all my insurance information, phone numbers for insurance support, phone numbers and addresses of my physicians and of course my medications and the scheduling of them. I separate these into files in my medical app. This purposeful organization keeps me from feeling frustrated when filling out medical forms and questionnaires, just knowing I have it all at my fingertips in preparation for an appointment. Thankful for smart devices. But I also keep hard copy files too…..just in case technology fails.

I have experienced that good doctors appreciate the quick information. Although if you are in a good medical facility in your area they have access to all your records. In recent years it is very easy for all medical facilities to link in and see your physical histories and that’s a good thing. Although I have seen things overlooked and not passed on correctly. There is a personal error and it is important to catch it and get it corrected.
I keep a screenshot photo album of my tests and letters of results on my phone and iPad even though I have access to my medical site, it gives reliable easy access. I keep printouts filed, for taking-along copies. I have an Orthostatic Tremor research file loaded on my iPad and I have printouts of the most valid current ones in a folder for myself and the many doctors who have never heard of OT.
I have all my information and thoughts fairly well gathered by the time I enter into that room with the doctor I feel competent and know what I will say and ask.
On my Mayo neurological appointments, I gave my list to my husband, asking him to track while I spoke, so he could remind me if I left anything out. On my 1st Neurological evaluation, the Movement Disorder Neurologist took my printout and had it transcribed to my records at Mayo.
I am concerned for people who lack confidence/the more elderly with less mental competency to advocate for themselves – bring someone with you.
I bring my husband along and I know for a fact that my husband’s presence changes the dynamics for me as a woman. Not only to help hear and convey support but there brings about a higher accountability in the room for you when you bring someone with you. I know it is sad to note these things but there is validity to the advocating process of not being pushed aside repeatedly when chronic illness is in pursuit of your normal life or the closest it can be to normal.
I don’t want to paint all doctors poorly in this area because many understand the urgency when we advocate for ourselves just as they would for a loved one of their own.
A PCP (primary care physician) is limited to the most common health care elements of their medical field. Specialists have become essential, providing care outside what your family practitioner has limited knowledge, recognizing this is also part of advocating. A good PCP will know when to refer you to a specialist, although I have had to advocate and ask for a referral. It’s important to research specialists to have an informed opinion and influence your PCP in the direction you want to go with a specific referral.
Sometimes health care facilities ask their physicians to support towards clientele of newly employed fellow specialized physicians, this may not always work out for your best health care.
I once was in a position to decline one specialist within the same health care facility, asking for a specific other (gastroenterologist). I was informed they did not prefer for me to change. I kindly told the lady on the phone, “I understand you are doing your job in telling me that they do not prefer…..but, I know if you were personally in my shoes and you had a preference, you would do as I am, so I am telling you what matters is what I prefer”.
I had an experience with the previous gastroenterologist in a medical setting indicating a list of logistical reasons to change.
They told me I could not do this change over the phone, that I had to come in and fill out a form to transfer. I did and when the form ask for my reasoning I did not inform them of the bad experience. I did state that I wanted the appointment with the gastroenterologist that I was originally referred to by my referring physician (Whom I had great confidence in his guidance in his original referral).
I did not inform them of my skeptical experience because I did not want it put into the record, as being a critical patient.
This was my experience with the one they placed me with for a “sooner appointment.”:
He entered my curtained cubicle where I was scheduled for an out patient procedure he had ordered and scheduled and ask me what I was there for, what was my problem? I had already been through one outpatient procedure that he had ordered, his assistants processed that one and had established that I had an allergy to nickel, the information needed because they were going to insert a mechanism through my nose into my stomach. It was necessary to know not to use the one containing nickel, his assistant entered and informed him of this. It was obvious he had not reviewed my records before entering. He asked who ordered this procedure? I said you ordered it, just like you ordered the last one. As he began looking on my records with the computer beside me, I watched with my diminishing confidence, knowing he did no pre-prep in studying my past tests (2 of them) and why I was referred to him. We can contribute all the excuses for this situation; he was in a hurry, human error, he was confirming my symptoms, but it was all very obvious that he indicated a possible habit of patient neglect.
We as patients invest in good care, we deserve it and we should expect it especially in the medical field. Avoiding situations such as the above requires being proactive. Advocating means doing our research and standing firm with kindness.

Some of these diagnostic journeys can take years.
My Sjogren’s diagnosis which was 14 years ago, at the time was estimated to take 7-8 years to be diagnosed. I was one of the fortunate ones even though I did not present with the classic SJS symptoms; dry eyes and dry mouth. I had chronic swollen tender neck lymph nodes for many months with extreme fatigue when my PCP ordered an RA blood test that revealed a positive outcome. He referred me to a rheumatologist, who processed me through the necessary labs. I was diagnosed in a record time of about 5 months. Though the experience with that rheumatologist was a lesson for me in how a patient should respectfully be informed. I received a letter in the mail telling me I tested strongly positive for SSA, SSB, and ANA, complete with the numerical values (an autoimmune lab test). This letter never even had the word Sjogren’s on it. I called the office for clarification, they said the nurse would call me.
There seems to be a serious problem with most medical offices in the area of actually having ‘call back integrity’, when they say, “Someone will call you.” This problem has caused me to say, “How good is your office at calling patients back when you say you will?”. (Advocating for responsible callbacks) 😉 I did eventually get a nurse on the phone, although not without my pursuit. She said you have Sjogren’s. I did not have a clue what Sjogren’s was.

I call this a medical fail when a patient has to call about an unknown-to-them-auto immune diagnosis. We need explanations. We need information. We spend for insurance, we spend for labs, we spend for office visits hoping to be heard and respectfully informed. In the medical world, if you read this, I am advocating for patient respect and accountability, which you are paid well for.

I have the very best physicians on my health care team currently and I intend to always keep it that way; being an advocate for good health care is a win for everyone it’s a healthy reciprocal of respect and balance.

I am coming now from a place in writing and expressing this whole blog series as I have been newly diagnosed with Orthostatic Tremor. I have read so many stories of patients in the OT support groups globally, who were shunned and set aside for many years with this very rare neurological disorder. Primary care physicians have absolutely no knowledge of OT. My health care team had never heard of it and I understand that fact. Though it left me feeling a bit lost in my weakness of standing leg tremors, feeling vulnerable and unstable with no answers. Many neurologists seem to have minimal awareness of OT. There is a shortage of movement disorder neurologist, who have limited awareness because of limited resources of research that delivers minimal treatment options. This all brings with it what seems to be a weird stigma of isolation for OT patients. Orthostatic Tremor is scarcely mentioned within major medical facilities, therefore it is understandable why minor medical facilities do not know of Orthostatic Tremor. Even within Neurological Movement Disorder Tremor sites of medical research study, information is minimal.

I admire that one clinical practitioner put it like this – Look for a doctor who has clinical curiosity. That statement puts such validation in listening to the patient. I hope for future physicians and researchers of this Orthostatic Tremor neurological disorder to possess clinical curiosity. Lean in with interest, as OT may not be as rare as they think. We are under-diagnosed due to a lack awareness. I am ADVOCATING for Orthostatic Tremor AWARENESS.

2) Navigating through the complexities of your insurance.

Advocating with Insurance obstacles – Yeah! That too.
Insurance seems to be orchestrated with complexities.

Sometimes you need pre-authorization for treatment from your insurance for out-of-network permission to get better health care. The ball won’t roll without it. I learned that it takes relentless pursuit from the already exhausted patient.
Appeal. Appeal. Appeal. And do a fast appeal if necessary.
My case manager was an incredible asset. She checked on me and responded to my messages, returned my calls, and came alongside me every step of the way. It was not easy, as I was coming out of the network from my Arkansas area to Mayo of Rochester. When she said we will expedite this pre-authorization. I thought; I like that word it went well with expedient. I told my PCP I needed expediency to help get a referral going. My case manager was an angel. I believe she was a blessing from God in the middle of some serious infirmities. My leg tremors seemed to be progressing and I felt weaker every day. It was scary, as I could not stand still past 1-2 minutes. So expedient was my new word.

I will expand on this when I tell of – The February 2021 health crisis with Orthostatic Tremor, my story in my next blog (3) of this series.