Sue Schrock

First post: Aug 16, 2022 Latest post: Feb 25, 2024
In October 2021, I began to experience minor swallowing difficulties. It was concerning, however, I thought it would resolve on its own. When swallowing became more difficult, I saw my primary care doctor (PCP). After a few visits, she referred me to a surgeon who ordered a cookie swallow test and also performed an upper endoscopy. Thankfully no throat obstruction was found, however, a narrowing of the esophagus was shown. There were a few additional tests that followed, including a barium swallow test, which showed regurgitation clear up to my collar bones from the stomach and another test that showed the sphincter at the lower end of the esophagus before entering the stomach is working at about 50%, likely the reason for the regurgitation and potentially the esophagus narrowing. 

We traveled to Florida in January 2022 and I experienced worsening neurological symptoms such as weakening on my left side and then on my right side. My husband commented on my posture and asked why I couldn’t stand up straight. Something was wrong. The normal cadence walks we enjoyed were slowed and I felt like I was plodding along. My head stooped over and felt like the heaviness of a bowling ball was on my neck and was constant when I walked. Poor endurance and stamina, shortness of breath, difficulty climbing stairs, inability to reach over my head or put dishes away on a higher shelf, weight loss, speech changes, and flattening of facial muscles all became apparent in the months that followed. I had to admit I was ill. 

We returned to Goshen and I saw my primary care doctor in mid-May. She wasted no time. Shortness of breath was concerning and as she had detected a heart murmur in the fall, she sent me to the Cardiologist. An echocardiogram was ordered and aortic valve stenosis was discovered. Another echo will take place and additional follow-up is required in the fall of 2022. 

The remaining neurology symptoms were concerning and a neurology referral was sent out. Mid-June I had my first neurology visit. It was thorough and included an EMG with a series of pokes and prods with wires to see how my muscles reacted. What he saw on the EMG wasn’t exactly pointing in any one direction. Labs were ordered and completed on the same day. My doctor didn’t think I had ALS or MS, praise God for that, however, he admitted I made his brain hurt, but he shared that he likes a good challenge. :)

When the blood results came back the muscle enzymes were high as he expected, indicating a diagnostic deep muscle biopsy could be done for a definitive diagnosis. A muscle biopsy was completed in early July. The Diagnosis of Dermatomyositis (DM) and Sarcoidosis was noted. Additionally, my blood work showed I have antibodies for a syndrome called Myasthenia Gravis (MG). Both DM and MG are autoimmune diseases (AID) and add to other autoimmune diseases I’ve had my entire life, including Sjogren’s syndrome which includes Rheumatoid Arthritis and dry eyes and mouth. Raynaud’s is another and causes purple, cold blotchy painful fingers. Apparently, one autoimmune disease opens the door for more.

While I have managed both Sjogren's and Raynaud's, the addition of Scleroderma has caused the body’s natural defense mechanisms to turn against my body and attack it as if it were an invading organism. Both Dermatomyositis, which is considered a muscle wasting disease and affects fewer than nine in a million people worldwide and Myasthenia Gravis account for my inability to swallow, weight loss, muscle weakness, and all the other associated symptoms.

The good news is that both of these new autoimmune diseases are treated similarly. There are no current cures, however, therapy can help with symptoms, which is critically important, especially considering the scales as of today (8/17/22) show my current weight at 87 pounds. I continue losing about a pound a week.    

I have additional body scans next week to ensure there is not any cancer underlying these new findings. Once those tests are complete, treatment will begin. And, we will hope for the best.

It has been quite the journey, with so many unexpected twists and turns, not a journey I expected or wanted.