Good Morning Fam,
Y’all I am ready for a long sleep and a cozy morning. I am ready for some answers and ready to feel like I can finally take steps to healing. Last week was just full of doctor visits and blood work. If you are on our social media then you may have caught our stories but I wanted to take a moment to break it down. I know some of our family is trying to keep up with what is happening and here is the best way until I get a few more answers! So lets deep dive into this blog!
We started out on Monday with a doctors visit with my PCP. I had scheduled this appointment back in November to start the ball on getting a diagnosis. The up side to all of this is that I have had dizzy spells that made it close to passing out and tremors before and have told my PCP about these issues. Now the big factor is that I have had Cyclical Vomiting Syndrome (CVS) take a break for the last 4-5 months that we could see that CVS was actually masking a lot of symptoms. So at this visit we were able to discuss how it is in fact not CVS that is making all of this happen. That maybe something else was going on. When explaining everything my PCP did try a few things while in office but then she said “I think we are leaning towards POTS or SVT.” She had me give some blood so they could run standard test to make sure it wasn’t anything simple that was off. Then she also sent an order for a heart monitor. By that evening, I had received all my blood work back and the only thing semi alarming was my sodium level was the lowest positive number they want. So the blood work technically came back good.
Wednesday was the day we went to a new doctor with Functional Medicine Neurology and did a big new patient testing. I did things for balance, used a tv to watch how my eyes reacted so they could see how my nerves react. Then we went into a patient room where the doctor proceeded to try some more different reflex and eye tests to see how my body reacted. During this we found that my right side is weaker, I have massive sensory issues, my left side has double vision, I zone out in my eyes while people talk/ during the tests, brain fog, struggle eating (swallowing), I shiver but its my body freaking out, tremors/ spastic twitching is my body freaking out, migraine auras and a few more things I am forgetting. All of these are things I thought were normal but turns out it is not. As it currently is told, my brain to gut axis is off. So when that happens your body starts giving off signs of issues. Well my body started finding ways around these struggles and just ignoring the signals. But now its to the point that my body is screaming for help by having massive twitch/ spastic tremor moments to say it is struggling. She agrees that I do have POTS but she believes I have also had this struggle since I was 5. We walked away from this appointment with some more knowledge but at the same time a little bit with questions. Now thats also because we have had a few minutes to sit back and think but we also chat with her for an actual game plan on April 9th. So said questions can be asked then! The current game plan is that we will be working to realign the brain/gut axis and with that I should only have to deal with “flare ups” instead of always being in a flare.
Thursday was a bit of an easy day where I went to Lexington and had a heart monitor put on so we can see how my heart reacts to my getting up and down styles. One thing we didn’t realize may be aligned with the FMN was the fact that I randomly have heart palpitations. I just figured it was a normal occurrence and never made concern about it. Well since having this monitor on, I have had a few dizzy spells and one heart palpitation. I was able to mark those moments and they will be able to see it in my chart that something happened in those moments. I am hoping that the palpitation will give some answers. It was a relief that the issues I am having are actually happening while I am being checked. As sometimes they do not actually happen when the time counts.
Friday I went to our local Labcorp and got the blood work done for the Functional Medicine Neurologist. Simplest day but it was much appreciated too. After all of this I needed the moment break. I did contact my PCP this day to get a tilt table scheduled as we wanted one and I was thinking FMN would do the test but they did not. Oh well! We chatted with the PCP and she sent over and order for that! So waiting for a call to schedule that soon!
Overall we learned that the FMN saw all of these small signs and gave this analogy. She said “all of your small signs are filling a bucket. At some point your bucket with overflow. All of these signs were alerting us this entire time but now its the time to get to this before you have any more big struggles.” So it essentially sounds like we are catching this before we have any more big struggles on our hands. More answers will come next week and a tilt table test at some point. Then this heart monitor will be sent back and once all of that is done we will start the treatment plans. Next week the FMN will start our game plan. Then the goal is to get everything realigned and then she can send me back to my team of doctors for maintenance. I absolutely love the team I have and would like to stick with them and she absolutely agrees. The massive blessing is that everyone is so willing to work with each other and wanting to keep this as holistic as possible. We want supplements and natural ways. I will have a therapist, chiropractor and PCP all willing to work with the FMN to further a healthy life. I assume I will need to go back to the FMN at times to do a check in but once the intense therapy is done, my goal is to go back to my team.
I am thankful for the answers but I will say it looks like the next few months will be a tad bit crazy with relearning and finding new ways to help my body. We are still planning to go to vacations and enjoy ourselves but we also will be taking into consideration that I need to be able to assist my body during these times. That may mean I bring my own food like I already do. That may mean I take breaks, regulate the sensory issues, meditate, etc. Whatever ways work best, I will be using these methods to assist my body.
For now we are just writing down our questions and preparing for the next steps. We will be keeping everyone updated as we can with the blog and we are working on making our phone calls but we wont have another update ourselves until next week! That is ok with me!
Thank you for reading this book of a blog. I tried to keep it as simplified as possible!