As I share an update of my first trip to the Cleveland Clinic, I can also share that Cleveland does indeed rock

Thank you to everyone that has reached out to me to ask about my visit to Cleveland Clinic. I’m a lucky girl to have so much support and love. And I found out for myself that Cleveland does indeed rock!

We’ve been home for two weeks and I’ve been negligent in posting an update.  No excuses, but several reasons for the delay.

One…I’m simply overwhelmed and still sorting and processing everything I’ve begun learning.

Two…I was selected for jury duty right after we returned and the trial lasted most of the week following my visit.

And three…honestly…it’s just taking me a while, between the trip and jury duty, to find the energy to do much.

Up until my visit to Cleveland Clinic, every scan, lab test, and office visit for the last two years has ended with something that sounds somewhat like this… “the results didn’t reveal anything conclusive. follow up with your ______(insert provider of choice)______. good luck.” When the answers weren’t easy…when they wouldn’t reveal themselves…I was passed on from provider to provider, becoming no one’s responsibility…no one’s “problem”.

There are no solid answers yet, but…I’m FINALLY being seen and heard. I started writing a running update last week as results began coming in. Here is that update and where things currently stand.

“care for the patient as if they are your own family”

It was absolutely exhausting. But…CC was absolutely AMAZING! 

They are so thorough and efficient…things pretty much ran like clockwork in any department or sub-specialty I encountered. And yet, at the same time, they really listen and spend time with their patients.

For the first time EVER I had doctors ask “how can I help?”, “what do YOU think is happening?”, “what are your expectations from this appointment?”. Talk about a complete 180 from the word go!

Three appointments were on my schedule for Tuesday and two more were added as the day progressed…a result of findings during that day’s exams and consultations. So…I had five total visits just on Tuesday. A spine specialist, a neuromuscular specialist, and a rheumatologist were on the schedule. A visit to the lab for a multitude of screenings and a visit to imaging for an ultrasound were added. On Wednesday, I would see a second neurologist and an internal medicine physician. The internal medicine physician is essentially my “primary care provider” at Cleveland Clinic. I feel like she’s my traffic control officer. She oversaw all of my appointments with all of the sub-specialties and my visit to CC concluded with an hour-long “wrap-up” with her.

The first significant finding is a definite consensus among all five doctors that what is going on with my legs and everything that involves…the muscle weakness, the pain, the falls, the numbness and tingling…is NOT related to Parkinson’s Disease. It is completely isolated. 

I saw two different types of neurologists…the neuromuscular specialist I mentioned earlier and a movement disorder specialist, a neurologist that specializes in and focuses on movement disorders such as Parkinson’s and MS. There is agreement between the two of them that I have signs and symptoms of a different movement disorder that is NOT Parkinson’s. But…they believe that this may be presenting IN ADDITION to Parkinson’s, not INSTEAD of Parkinson’s.

The first added appointment on Tuesday was a visit to the lab for extensive screenings for SO many things. I set a new personal record for vials of blood drawn at one time with twenty-two vials being drawn that afternoon. Something that has really impacted me and embodies the way I feel about the care I’m already receiving from CC happened during this lab visit. The phlebotomist had finished drawing up all of the orders and said, “let’s count these up.” She looked at me and said, “there are twenty-two vials here. the answer IS in one of them.” That is how CC felt different. Instead of “nothing conclusive, follow up elsewhere, good luck.” I left with the feeling that if something is lurking…Cleveland Clinic is bound and determined to find it!

The second added appointment on Tuesday involved a trip to a satellite CC location for a pelvic ultrasound. Some of my symptoms raised some flags for the rheumatologist and she felt that this ultrasound was the next best step toward some clarity regarding these symptoms.

results are in

Results began coming back and my email began pinging with notifications that there was a test result or message in my portal with new information. So…what HAS been ruled OUT? Well, I do NOT have radiculopathy or polyneuropathy. I also don’t have myasthenia gravis. I most likely don’t have myositis or lyme disease, but further testing needs to be done to rule these two out definitively.

The neurologists have consulted with one another and agree that the best way to give themselves, and me, some clarity in regards to the additional movement disorder would be with an MRI…my last brain MRI was in November of 2017.

They also consulted with the spine specialist and would like to do a cervical spine MRI and a thoracic spine MRI to rule out spinal stenosis.

I have a virtual visit with one of my physicians on Tuesday, 11/1, to go over all of the lab and ultrasound results in detail. There are some abnormalities that are concerning and these are triggering second looks and additional screenings. 

The pelvic ultrasound came back with concerns. These concerns combined with some of my symptoms and some too-high lab numbers mean a consult to gynecology was ordered. The physician that ordered the consult anticipates that they will order a more comprehensive ultrasound and potentially a biopsy to rule out endometrial cancer. Based on my symptoms and what I’ve learned about my own body in the last several years…I’m not highly concerned about this and anticipate everything coming back clear.

Along with everything mentioned earlier, there is another cancer they are questioning and hoping to rule out. The combination of several of my symptoms with some of my lab numbers has them on alert and has a biopsy and/or a lumbar puncture on their radar. This one…? This one was on my own radar in mid-May. And…no one would listen to me. That’s all I’m going to say about this one right now.

overwhelmed and overly-blessed

Are you overwhelmed yet…? Yeah…me too. But, for the first time in 2 years, for the first time…I feel seen and heard. 

I have more information after two days at Cleveland Clinic than I’ve had in two years.

And more information is anticipated soon. We will be spending Thanksgiving away from home this year as I will be going back to Cleveland Clinic for a full day of appointments on that Friday. I will be meeting with gynecology for a consult regarding the ultrasound. I will have three different MRIs. And, I will visit the lab for additional…hopefully not twenty-two…vial draws for definitive answers about lyme disease.

SO many avenues are being pursued. Some of these avenues are being pursued out of due diligence…to eliminate differential diagnoses. And…some of the avenues are clearly quite scary. 

But…ALL of the avenues, I believe, will lead to answers in the end. I need them to.

I am unable to do about eighty percent of what I used to. Eighty percent of what I SHOULD be able to. I feel like an observer in my own life. 

This photo popped up in my Facebook memories today. This girl…this momma…was loving every minute of four spectacular days in Chicago with her crew. We explored and toured and ate and walked until we collapsed into bed eighty-seven stories up each night…our bellies full, our feet tired and our memories made. I miss this girl…I want this momma back.

I’m ready to fight whatever it might be. I just need to know what I’m fighting. But, one thing I do already know…? I know I am no longer fighting my own care team.