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Chapter 5: Testing and Training

I continued to suffer with severe dizziness, nausea, neuropathy, numbness in my hands and feet, burning veins, head pressure, blurry vision, tinnitus, ear fullness, fatigue, anxiety, depression and so many other symptoms. Things just seemed to get worse and worse. My mother had scheduled a neurology appointment for me months prior. The time had finally arrived where I was able to get in to see someone. We arrived at St Vincent’s Hospital, and I was evaluated by neurologist, Dr. Ossi. When I told him my symptoms, he quickly ordered an MRI to rule out a brain tumor. The pushing sensation that I was experiencing seemed to worry him and my primary care doctor. Unfortunately, the neurology department that Dr. Ossi was in at St. Vincent’s was shutting down, so there was no following up with him after the MRI. I would need to find someone else to go to if the readings came back abnormal. Boy, would I be in for a surprise.

My initial MRI was scheduled for May 11th at Jax Beach Open MRI… yes, open MRI. Since I was severely struggling with anxiety, I didn’t know if I would be able to handle being put into a confined tube for an extended period of time. With an open MRI, you can sit upright and see outward in front of you rather than being inside the machine. When I arrived, I quickly found out that it was not open. It was VERY confined. I did my best to make it through but unfortunately, I couldn’t complete the exam. My anxiety got the best of me and I needed to reschedule. On May 18th, I arrived at advanced diagnostics where they really did have an open MRI. Fortunately, I was able to make it through the 45-minute procedure and then the waiting game for my results began. Since the results were not being sent back to a doctor, as that department at St. Vincent’s was closing, I had to call in for the results. After going back and forth with Advanced Diagnostics for quite some time, explaining to them that I was no longer able to see Dr. Ossi, I was finally able to retrieve my results by them forwarding them to my primary care doctor. What they revealed sent me into a panic (see the results here). While I didn’t understand a lot of the medical jargon, I did understand that “demyelization in the periventricular white matter” likely meant Multiple Sclerosis (MS). Crap! What was I to do? It took me months to get in to see a neurologist. I called my mother to get her advice.  Being the medical field, she decided to call in some favors and franticly called around to some of her contacts. Fortunately, she was able to get an appointment with a neurologist who specialized in MS, and she got me in within a week.

We arrived to Baptist Hospital at the beach on May 31st, 2023 to meet with Dr. Sanders. I remember that I could barely function that day. Just getting into the car was next to impossible. In the examination room, Dr. Sanders sat me down for what looked like was going to be some very bad news. Both my mother and I waited nervously for her to report her findings. She pulled up my MRI and gave us a long speech as to how MS occurs and what it looks like. Before she was able to get her point across, I felt a seizure coming on. I quickly ran out of the room to find a restroom where I could splash some water on my face and stop myself from passing out. Once I was able to gather myself, I headed back into the room where she continued. Dr. Sanders held up what looked like an X-Ray to the fluorescent lighting. She pointed to what looked like white lesions on the X-Ray film. She said… this is what it would look like if you were to have MS. She then pointed to the MRI on her computer screen and said, I see no signs of demyelization here on your MRI. You certainly do not have Multiple Sclerosis, she said. What?! How can that be?! While I was extremely excited to hear that I didn’t have a lifelong disabling disease, I was confused as to how the radiologist at Advanced Diagnostics could have gotten it so wrong. Dr. Sanders said that she didn’t know what the radiologist saw, but that it was not MS. Over the course of the next several months, I would confirm her findings with 5 other neurologists… just to make sure, of course.

The radiologists report not only caused me additional PTSD, to what I was already going through, but it caused a lot of other doctors to question me. Many ENT’s and Physicians wanted to go off a professional’s findings and not go off my word that he got it wrong. Which was understandable. One of the doctors told me that I need to either have the radiologist fix the report, or I needed to go in for another MRI. I called Advanced Diagnostics to ask if George Vega (the radiologist) would re-read the MRI and do another report. After a couple weeks of hassle and going back and forth, the radiologist told me that he was sticking to his findings and that he wouldn’t change anything. This again, caused a lot of problems with other doctors. Finally, Dr. Sanders agreed to call George to put an end to it. While I wasn’t on that call, Dr. Sanders reported back to me that he agreed with her that there were no signs of MS. Wow! What a nightmare. To this day, when I go into doctors’ evaluations, I have a lot of explaining to do.

I asked Dr. Sanders … if it’s not MS, what is it? What could be causing all these symptoms that mirror MS, and “looked like MS” to the radiologist? At the time, long covid was barely on my radar, and as I would soon find, many doctors didn’t like to use those words, as they really didn’t know enough about it. Dr. Sanders suggested that it could be a “Functional Neurological Disorder”, also known as FND. She refereed me to this website: https://fndhope.org/

Was it treatable? I asked. She said that it was and referred me to this website: https://unlearnyourpain.com/, which led me down a whole different rabbit hole that would last for another 6 months. The idea behind unlearnyourpain.com is that you learned your pain, and that the only way to fix it is to think differently about your pain and retrain your brain to get healthy again. It all sounded like a bunch of bologna, but I was willing to try anything at this point. I purchased the books on the website, started consuming everything you can imagine on what they call “the mind body syndrome” and even started attending video webinars about the topic.

And of course, as I do, I started researching the internet for courses on brain retraining. I came across one that looked interesting called Re-Origin. The owner of the online course, Ben Ahrens had lime disease and was bed ridden for 3 years. He claimed to make a full recovery from his illness by retraining his brain back to health. I was intrigued and scheduled an onboarding call with Ben after purchasing the $300 course. I believe I must have found the course in its early days as I don’t know if you can meet with Ben personally anymore. Ben’s story was quite impressive. You can see his ted talk here:

I was hooked. Although I could barely function, I devoured the course and did everything to the “T”. The course discusses a 4 step process to retrain the brain:

Reorient (what is keeping me from being at ease?)

Reset (what do I know now to be true?)

Replace (what visualization would be most uplifting for me now, be sure to include all 5 senses)

Reinforce (How can I celebrate myself for interrupting an old loop and building new neural pathways that support healing).

The idea is that whenever you experience your symptoms, you would think differently about them to retrain your brain.

I was to repeat these steps several times per day, walking into the steps as I rehearsed them. It goes a little something like this:

Step 1: Reorient

As you are experiencing a symptom you tell yourself: PAUSE! While holding your hands up in the air, you imagine as if you trapped that terrible feeling/symptom in your hands. Then, you minimize that feeling and release it by throwing it away, again gesturing with your hands.

Step forward into step 2: Reset

Gesturing with your hand in a looping motion, you say: My brain has gone into an unhelpful loop and is throwing me through a loop.

These worries about [symptoms: dizziness, nausea, brain fog, pain, tinnitus, fatigue, stress, anxiety, depression, neuropathy, numbness, etc etc] are a result of old programing in my brain trying to protect me, but now that I know that they are not dangerous and that they can’t hurt me, I choose to let go and relax my body.

Let your body go loose and shake it off.

Thank you, limbic system for trying to protect me, but you can be calm now. I am retraining my brain and moving forward. My immune system is best when my mind is at rest.

Thank yourself by hugging and calming yourself.

Step forward into step 3: Replace

Step into a new experience that you create, where you can drop into a vision. This can be a scene, a memory, or a place that you want to go.

For me, it was a memory of snowboarding in the mountains in Switzerland at the Matterhorn. I also had a memory of relaxing after a long day on the mountain with friends in British Columbia. We would sit out on the 2nd level back patio near the fire, sipping hot coffee or coco as the sunset. I could see the mountain, Whistler in the background and smell the crisp cool mountain air over the fire. I felt safe, comfortable and with friends. I could hear the wind blowing through the trees while the snow fell gently off of them.

Step forward into step 4: Reinforce

Here is where you reward yourself for turning that bad feeling into a new feeling. You reach out in front of you making a fist with your hand, like you are grabbing a lever. The lever turns up the brightness and definition of the great feelings from step 3. Slowly you bring that lever up, then up further until you have your hand high above you. Then, you scream … YES!!!!

Now turn around and look at how far you have come. You started in a place of sadness, depression, pain and suffering. Now, take a moment to acknowledge yourself with gratitude for what you have done.

The science is there, but difficult to believe at times… especially when you are in as much consistent pain as I am. The question for me was… will it work? Or am I just tricking myself? This is something that I would struggle with for months as I suffered through these steps daily.

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