From Slurred Speech to Lost Strength, Romy Shares Her LEMS Journey
April 25, 2016
by Romy Braunstein
In 2000, one year after my herniated (L3,L4) back surgery, I went back to my Neurosurgeon with a list of symptoms I was experiencing that I kept on a sticky note. I read him my list and asked him if he could have done something wrong. He said “NO,” and he then referred me to his physician friend, a neurologist downstairs at a local suburban hospital.
This new neurologist saw me right away. My symptoms were chronic fatigue, muscle weakness, dropped face, slurred speech, walking unsteadily, falling often, and problems with stair climbing. The neurologist looked at my “stickie note” of symptoms and looked at me and said “I am pretty sure you have Multiple Sclerosis.”
Multiple Sclerosis, MS. I had a close friend just pass away from complications due to having MS. I walked out of his office crying, very angry and did not make any follow up appointment with him. I was pretty sure that their needed to be some kind of test to confirm a serious diagnosis like MS.
I spent one year in shock. I was referred to a neurologist at the University of Pennsylvania. I met the doctor and read my symptoms. He did some basic strength tests and scheduled an EMG the same week to test the nerves that control my muscles. Immediately after completing EMG, the neurologist told me I had a diagnosis of Lambert-Eaton Myasthenia Syndrome (LEMS).
Over the next 10 years I was on various medications including Mestinon and Cellcept along with IVIg treatments. I felt a little improvement, but after a few years the affects wore off.
After years of begging for an alternative medication solution, he wrote down on his prescription pad 3,4 Diaparadine, circled it, and wished me luck on finding it. My neurologist made it very clear that he did not want to help me any further, because my condition was so rare and he did not like paperwork. I was not sure what he meant my paperwork and I did not care. I need to find 3,4 Daip.
I was on a mission to find this medication and found two clinical trials for 3,4 Diap on the computer. I called the clinical trial doctor’s research office the next day, and I flew out to meet him the next week. I moved from Philadelphia to Phoenix for three months to start the trial and stayed in a hotel. My doctor was so excited to have me as a patient. That was so heartwarming that he was excited to change my life!
In January 2011, I started the Catalyst clinical trial with 3,4 Dap. Twenty minutes after my first dose, I was able to walk steady, my chronic fatigue faded away, my energy level picked up, my face lifted up, my balance came back, and I walked around the driveway of the hotel. I drove to a supermarket and shopped without a motorized cart! My husband and two daughters and family are my biggest supporters and help me through my journey.
Prior to diagnosis, my mom accused me of being a drug addict. My husband and girls knew I was not on drugs, but they saw my daily struggle. But, I can see how people would think that way. Cops would see me walk and ask me if I was okay, as if I had been drinking. Being 6’2 and staggering it was hard to blend in.
Now life is good! The Phoenix team at Barrow Clinic saved the quality of my life and I am so grateful.
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