Days 41-48: Getting a Diagnosis Part I of III

Days 41-48: February 13th - February 20, 2017 

Location: Potomac, MD

 

President’s Day is a holiday I’ve hardly paid any attention to in at least a decade. I’ve always worked on the holiday so it normally would just be a slower day at the office. That has all changed and President’s Day will forever have meaning to me.

The week prior to President’s Day was eventful to say the least. It all began on Monday February 13th, 2017 when I had an arterial Doppler test performed on my left arm in an attempt to identify the root of the enormous amount of swelling (and pain) in my left arm. Dr. Sethi was looking for a possible blot clot. Well, my wife and I beat traffic and reached my 8:00am appointment early with the goal of us both heading to work following the test. We arrived so early we had time to eat breakfast before at a tiny diner prior to the appointment. The facility we went to informed us with the amount of swelling I have, their machines wouldn’t pick up anything worthy of the radiologist’s report so they sent us to another location with better machines. Now the workday was getting thrown off as we were scrambling to get to the “squeeze-in appointment” only to hurry up and wait in reception for hours. I let Crissy head off to work since I was going to be a while. By the time the test was done, it was about 3:00pm and I had been offline and away from clients and colleagues pretty much all day. Ultimately, the Doppler ended up yielding nothing. The week got worse with a sprinkling of good and back-ended with awful from that point forward.

 

Up next, was the Valentine’s Day Mess on Day 48. You really should read that post though the quick hitters are bone scan, debilitating pain, still trying to work, and a ruined Valentine’s dinner with my wife. Please do read the full details of that blog post as a bone scan is a KEY examination tool the docs can use to identify CRPS. The bone scan results would be available in a week.

Following the disastrous Tuesday February 14, 2017 Valentine’s Day Mess, I had the following:

  • Wednesday, February 15, 2017: conference call meeting of my professional life with one of the world’s largest banks.
  • Thursday, February 16, 2017: 2 meetings with huge potential in a managed services capacity.
  • Friday, February 17, 2017: appointment with Dr. Morrison to see what else might be going on.

 

The meetings all went fantastic with BIG $$$$$$ figures in these deals. I was beating goal and setting up for an incredible sales year and beyond. The commissions on those deals were life-changing money for sure. So I did what any good sales professional would do and powered through my personal challenge to send thank you notes, update folks internally, take action on next steps, etc. We had a great chance to win some enterprise level clients and work. The pain was not stopping me because I was too determined to win. Little did I know that would be the last time I stepped foot into a TransPerfect office – the company I was a part of for nearly 10 full years.

 

Retrospectively, this was the biggest pot of fool’s gold ever – for many reasons. By kicking my body into overdrive after not being present the first two days of the week, I worked late despite the pain. What was that good for? All it did was make me hurt exponentially more to a point I couldn’t get out bed to get to my appointment with Dr. Morrison that Friday morning on February 17, 2017.

After getting Dr. Morrison to agree to move my appointment back by an hour, Crissy and I made it there. Worried, scared, angry, and exhausted. Dr. Morrison, my general practitioner, was incredibly upfront and honest that he thought my neurologist, Dr. Sethi, had done great work and he doesn’t see anything that jumps out at him. He wanted to add a venous Doppler of arm into the mix to see if anything was clotted there. I did have a clot in my left leg several years prior due to flying with an immobilized ankle (basketball injury). Dr. Morrison also let us know depending on the test results, he may recommend other treatment or a hospital referral. So we left there and headed out to the testing facility for a second time in 5 days. Neither of us would make it to work that day.

 

Back at the testing facility as Monday and I had the same technician as earlier on in the week. Coincidentally, we went to the University of Maryland together. I know her husband too. Crissy joined me this time and while the small talk with a technician she did not know may not have put Crissy at ease, it did help take the edge off of both anxiety of craving a confirmed diagnosis and the pain of it all. Unfortunately, we left with zero results again. Wonderful.

 

My next move was a call to Dr. Morrison again and see what he thought was next. Since I couldn’t reach him, I decided to give my cousin, Dr. Todd Perkins, a call. Todd is a dermatologist and he referred me to Dr. Morrison when I was in need of a new general practitioner so I thought perhaps one doctor to another they might be able to chat if Todd had a baseline on what was going on. Todd and I spoke and of course I filled him on every detail. He was extremely concerned and agreed to come visit me the next day, Saturday morning.

 

Let’s take a step back and fill you in on my symptoms by the time Todd connected with me. It’s important to understand what I was experiencing at this point. By this point in time, the symptoms were as follows:

  • The color of my entire left hand (palm up or down) was red and purple with snake scale skin seemingly shedding. (images below)
  • My left hand was swollen to a point I could not move my fingers. (images below)
  • My hand felt heavy and moving it in any direction at all increased pain. I would literally get shooting pains from my fingertips through my shoulder and neck area.
  • Pain was unbearable unless was lying down and even then I was often fighting off tears.
  • I felt a burning sensation all throughout my left arm.
  • I stopped eating
  • I was barely sleeping.
  • I had involuntary shaking in my chest that would go for about 15 minutes every couple of hours.
  • My body often felt cold with layers of clothing on.
  • Pain was spreading through my back and into my right shoulder.
  • I had no strength to open doors or carry anything in my right arm let alone my left.

[Best_Wordpress_Gallery id=”10″ gal_title=”Hand Swelling”]

I’m sure there is something I left out from the list of symptoms. My amazing cousin was walking into quite a mess as he came to be supportive and see if there was anything else he could think of. Shortly after Todd examined me, he made the determination that a) hospital admission was a necessity b) he was going to call Dr. Morrison and consult with him as an informed concerned family member and c) he also wanted to loop in another colleague of theirs, rheumatologist, Dr. David Wolfe. Todd leveled with me he thought it could be CRPS, but it had been a long time since learning about the disease in a singular course attending Hahnemann University for medical school. He also hedged and thought it might’ve been something more autoimmune. Todd noticed the atrophy in my left arm and spreading across my entire shoulder and upper back. He feared something terrible was going on because he was unfamiliar with diseases and/or infections that could cause that much atrophy in about 6 weeks. Atrophy was so profound at that point it looked as if my left forearm and wrist had turned into a skeleton’s arm. My bicep and triceps were literally dangling. Collectively, Todd, Dr. Morrison, and Dr. Wolfe agreed I needed to get into a hospital and Johns Hopkins University Hospital was my best bet provided I didn’t have to go in through the emergency room on a holiday weekend. The trio felt I needed a multidisciplinary evaluation. They felt IO needed to be examined by at least a neurologist, rheumatologist, and doctor of physical medicine in order to help understand what was going on. The three gents were going to work their magic and see if they could possibly find me a direct admission over the holiday. In the mean time, they thought a course of prednisone couldn’t hurt the inflammation. This was all very scary and I wasn’t sure what to make of it. I didn’t know how to communicate to family or friends how dire my situation was becoming. Thankfully, Todd made the calls to my parents to explain what he saw and the conversations he had. My parents were devastated and dropped their plans to come support their son and daughter-in-law. They were supposed to be leaving in a few days to go on vacation.

 

Once my parents joined the party, we began reaching out to anyone we knew who might have a connection that could get me into Johns Hopkins that weekend and bypass the ER. We called my another cousin “Todd” (and a lawyer), Todd Forster, my cousin, Glenn Zimmerman, my college roommate, Rob Kleinman, and my childhood neighbors, Dr. Johnny & Cathy Salkeld. Our strategy: Todd F. had a direct connection to the Johns Hopkins executive leadership board. Glenn’s cousin is a doctor in the gastroenterology department. Rob had a connection to a fund manager who works on the Johns Hopkins endowment. Dr. Johnny is a doctor practicing nuclear medicine and works at Mercy Hospital in Baltimore and maybe he had an in. Not to mention, Dr. Morrison (a Johns Hopkins Med School alum) was working his old med school contacts and people through Sibley Hospital (a Johns Hopkins acquisition) where he does rotations. Everyone involved was sprung into action and trying to rescue me. Pretty good strategy if you ask me – even better people.

 

Saturday closed without getting me admitted into Hopkins. We debated whether or not to go in through the ER. I definitely didn’t want to go into a city hospital ER on a Saturday night. I’ve seen way too many episodes of ER craziness to go on a Saturday night on a holiday weekend. I could tough out the pain a few more hours and try my luck getting admitted on Sunday.

We didn’t have any luck on Sunday (February 19th, 2017) either. With it being a holiday weekend, many of the top docs and resources we were attempting to reach had been on vacation. The no big deal aspect from Saturday faded. I remember not once leaving bed that entire day save for the bathroom; which at this point I could barely make it to. The pain was so crippling I needed Crissy’s help to get to the bathroom. We did enlist the possible help of others. Crissy’s mom’s fiancé has a brother in Cleveland with great connections all the way at the top of the Cleveland Clinic. Crissy, my parents, her parents, and I decided if we got admitted into the Cleveland Clinic that day, we would drive or fly me to get me there. Otherwise, see which of the two hospitals I could get admitted into first.

 

Dr. Morrison checked in with me on Monday morning. Fortunately, his office was open on President’s Day. Unfortunately, he didn’t have any success getting me admitted. We talked about the prednisone and the lack of relief I felt taking it. It was time. The order was to go into Hopkins via the ER. We were going to Baltimore – the city Crissy and I got married in. Dr. Morrison and all of my helpers would continue to work their phones to help us as best they could.

 

Continue to Getting a Diagnosis Part II.

 

Beat CRPS!

 

Jason

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