Getting the Diagnosis You Want, Even If It’s WRONG (PART I 🍀 🦆)

July 2, 2018

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As 2017 came to a close I learned my trusted Neurologist was recruited to go begin a Stroke Clinic.  As I came to realize the patients he was going to support would appreciate his thoughtful, caring wisdom, I simulateneosly wondered who could possibly fill his shoes in caring for MS Patients??

I decided to begin my search with a well-known, highly credible Neurologist that specialized in Multiple Sclerosis and ran a MS Treatment Center.  This Neurologist has a very long history of helping people with MS in this large city, was very well known and respected in her profession and held that respect for over 30 years.  I expected unprecedented quality of care from an entire MS Clinic Team of professionals and the top MS Neurologist in the region.

What I got was a Neurologist that clearly had entirely too many patients, didn’t take the time to get to know my history before meeting me and didn’t care to review my medical history written carefully by my previously Neurologist. Instead she preferred for me to remember each significant event of my MS HISTORY over the past 5 years.  The difficulties in that task were huge.  To begin with I had been raising 2 teenagers, one preparing for college, my husband quitting a corporate job to begin a new business, leaving a teaching position, laundry, dentist appointments, Christmas, birthdays, prom, learning to drive, parent-teacher conferences, school committees, etc… , etc…. And don’t forget my short term memory issues.

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At the end of the appointment this Neurologist changed my diagnosis from Relapsing and Remitting MS to Clinically Isolated Syndrome (CIS) based solely on her evaluation of events from my imperfect memory.  She said that I was one of the “20% of people that never progressed beyond CIS nor onto Multiple Sclerosis”.  Further, because it had been 5 years and there was not a second exacerbation, again based on my imperfect memory and her incorrect diagnosis from my poor timelines, articulation and memory.  (She did not seem interested in reviewing the descriptions left from my previous Neurologist).

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What is clinically isolated syndrome (CIS)?

Clinically isolated syndrome (CIS) is the term used to describe your first episode of neurological symptoms that last for at least 24 hours and are not caused by anything else (such as a fever or infection). This can be an indicator of what may turn out to be multiple sclerosis. You may never go on to experience further symptoms, but if an MRI scan shows brain lesions that are similar to those seen in MS then your chances of having further episodes and ultimately a diagnosis of MS are higher.

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It was suggested that I stop treatment and see the outcome on a MRI in 6 months.  Perhaps yearly thereafter.  Based on her credibility and reputation, perhaps even a lingering denial on my part or a yearning for words that left me feeling like a ton of bricks were taken off my shoulders. If in fact I didn’t have MS I had a new beginning to partake in.  I felt free!! So, I agreed to stop treatment.

I WAS ONE OF THE LUCKY ONES!!!!!!

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ME! me!! Me!!!mE!!!! Moi!!!!! YO!!!!!! Mich

 

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excited kermit the frog

 

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10 thoughts on “Getting the Diagnosis You Want, Even If It’s WRONG (PART I 🍀 🦆)”

    1. I was her last appointment for the day—we waited so long we felt like we had been forgotten. Who knows how many people she saw that day — I’m sure her schedule is considerable!!! She also mentioned her nurse didn’t do her job documenting prior to her entrance into the examining room.

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  1. I think most neurologists do not pay close enough attention to what we are experiencing and definitely have too many patients. Misdiagnosis happen all too often, but then sometimes their second “guess” is also wrong. How did you feel once you stopped the treatment you were doing?

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  2. I have been at peace with my diagnosis of Multiple Sclerosis for a good time. With that said I have lived a very able bodied life since that diagnosis. For the first time in a long while I am seeing changes that have documentation proving their status 2 years ago! That clear evidence is scary to acknowledge and compare.

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