Out of Dissonance Comes Discovery

Dr. ANS's medical file for me!

Since our visit to see Dr. ANS on February 28th, I've been silent as to what is going on medically. This is in part because it has just been too difficult to find the time and energy to blog, and also because I'm still trying to process all that we learned during those back-to-back appointments with Dr. ANS and Dr. Complex. For those of you who have been wondering where things are at, here's the scoop!


This was my first face-to-face visit with Dr. ANS in 8 years, but as you can see from the photo of my file, our communications via email and phone have been extensive (!!). Here's what we learned during our three hour visit. 

Peony Preparing to Bloom

After spending a great deal of time going over my symptoms, daily activities, etc. Dr. ANS did an extensive exam, including several neurological tests and physical therapy screenings. In the physical therapy screening he found that passive straight leg raises or arms overhead provoke symptoms such as forceful heartbeats. In the neurological screening he found that my Romberg test was positive (falling within seconds and my first positive on this test); he was unable to find a radial pulse in my right arm when it was raised above my head; and when he asked me to lift my hands above my head while opening and closing my fists, I was unable to keep time with him, had slower verbal response, flushing, and sweating. Any type of neck extension provokes symptoms.

Pink Peony

My exam led Dr. ANS to say: This is NOT a normal neurological exam. Something is going on. Pointing to my file, he said he felt that if we looked at the entire eight years worth of correspondence the thing that stands out to him the most is the neck issues. What screams out to me is the neck, he said. Do I have some sort of anatomical abnormality that is causing such constant and persistent symptoms that have been unresponsive to any type of treatment, he wondered? An anatomical abnormality might cause such persistent symptoms because something (whatever it is that is going on) is causing a constant agitation of the ANS, never allowing it to calm down even with treatments aimed at doing so.

Pink Peony

Dr. ANS shared a story with us that he often teaches his medical students. When looking at a case like mine that is difficult to solve, he presents the line from a poem: "Out of dissonance comes discovery." In my case, the question is what doesn't fit with all of his other CFS and ANS patients? What doesn't fit is 1. my neck issues, 2. my lack of lightheadedness compared to other POTS patients, 3. my ANS responses in general. It's at once extremely difficult and incredibly validating to hear Dr. ANS say that I am unlike any other patient he has ever seen.

Pink Peony

Dr. ANS suggested that we pursue the route of searching for a possible anatomical abnormality. This would include a possible instability at the base of my skull or something like thoracic outlet syndrome. I won't go into all of the details of all of these things until I am further into the testing. The proposed testing was 1. Thoracic MRI, 2. MRI of the neck in flexion and extension, and 3. meeting with a thoracic neurosurgeon to investigate the possibility of thoracic outlet syndrome. So far I have had the first two tests done and will share the results in another post, as it is a lot to process.

We also discussed some possible medicine changes that I could make now or in the near future. One option is something called Low Dose Naltrexone (LDN) which is now being used for pain in patients with Fibromyalgia, CFS, etc. It's basically a teeny tiny dose of Naltrexone and was used for opioid addiction. I am trying this medication already. I am tolerating it, but it is too soon to tell if it is benefitting me.

Option number two is a new medication called Droxidopa (a norepinephrine precursor) that has been used in Japan now for many years in POTS patients and will hopefully be approved by the FDA and on the market as early as this Fall.

Since I had seen Dr. Complex the previous day, I wasn't sure how to integrate the two appointments. Later, in a phone consult with Dr. Complex, he was completely on the same page with Dr. ANS, which is GREAT! We are continuing to use the supplements I've been using, but I am not adding anything else in at the moment and am not doing any treatment for Lyme or other infections. I appreciate so much the mutual respect these two doctors have for each other and their willingness to work together. They truly do not put their egos in the way: they are both so focused on just helping me to feel better. What a blessing!

Pink Peony

Dr. ANS spent a lot of time at the end of the appointment discussing my options. What makes Dr. ANS so Amazing is his ability to honor, acknowledge and validate his patients. He said: "I wish I could tell you that one of these things (the MRIs, the thoracic outlet syndrome, the LDN, the Droxidopa) would be a 'slam dunk'. But I can't tell you that." Instead, he encouraged me to pursue each of the options as *I* felt emotionally ready. He wants me to pursue these options at my pace because, as he said, he doesn't want to look back 8 years from now and say: "I wish we would have looked at this sooner." 

He took time to tune into my struggles to feel that my life is meaningful, pointing out the ways in which I am magnanimous with what I do have, and that is the most we can do and be. He commented on my maintenance of a loyal circle of friends and family in spite of my illness, which he says is very unusual. I tend to attribute my friendships to the fact that my friends are, well, loyal and awesome. But he pointed out my role in creating these relationships. This is just a little snippet of what he said. What he said to me was so moving, so personal and so powerful that I will always carry it with me, but I won't share it all here.

In addition, Dr. ANS shared how meaningful it would be to him in his life to get me feeling better and solve this ongoing puzzle. Perhaps he will be called Dr. Amazing from now on?

Hearing that we may be taking a completely different path towards diagnosis was both exciting (that we might actually find an answer) and overwhelming (that 14 years later I'm still in for more tests and more doctors visits in search of these answers). What has helped me through this process tremendously is the permission and encouragement Dr. ANS gave me to take things at a pace that I could manage emotionally. I've been able to balance the pursuit of new answers while doing my best to live well now (aka new puppy!). 

Blessings,

Emily