It all started when Romy felt that her health was growing worse after having back surgery.
She believed that something was wrong, but her doctors assure her the surgery was successful. Romy told her neurologist about her symptoms. This included muscle weakness, bad balance, unexplained falling, slurred speech, and a droopy face.
Strangers assumed that she was using drugs or alcohol because of how she walked and talked. She even recalls a police officer stopping her because of it. This certainly did not make her feel good.
At first, she was diagnosed with multiple sclerosis. But a year later, another neurologist at the University of Pennsylvania diagnosed her with Lambert-Eaton myasthenic syndrome (LEMS). She received treatment that helped some, but after 10 years of treatment, the medication was no longer even slightly effective.
At this point, Romy was done dealing with the symptoms associated with LEMS. Due to the lack of support from her neurologist, she decided to take matters into her own hands and become her own advocate.
She went online and found the Phoenix Barrows Neurological Institute. After speaking with them and passing a physical exam, Romy was able to participate in a clinical study. For three months she used the Amifampridine Phosphate treatment. This treatment started working quickly and eventually, Romy’s balance improved, and her energy level came back.
Romy’s story is a fantastic example of why it’s important to advocate for yourself!
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