Romy Braunstein’s LEMS Journey
22 February 2016

Romy Braunstein’s LEMS Journey

LEMSDOB: 7-10-64

BIO: Female/Married-25 years

Children: Two daughters 22 and 17 years old

In 2000, my health was deteriorating. I was twelve months post herniated (L3,L4) back surgery and assumed something did not go right with the procedure. I visited the surgeon a few months later and read him my list of symptoms: chronic fatigue, muscle weakness, droopy face, slurred speech, bad balance, and unexplained falling.  He said that the procedure went as expected and these symptoms had nothing to do with the surgery. He then referred me to a Neurologist in another department.

The Neurologist saw me right away. He looked at my list of symptoms and said, “I am pretty sure you have Multiple Sclerosis.”  I felt crushed. A good friend of mine had just past away from MS.  I walked out crying, frustrated and angry.

I spent one year in shock.  I was referred to a Neurologist at the University of Pennsylvania (U of P). I met the Dr. and read my symptoms and he did some basic strength tests and scheduled an EMG the same week.  Immediately upon my completion of my EMG the Doctor he told me his diagnosis:  Lambert Eaton Myasthenia Syndrome (LEMS).  Over the next 10 years I was on Mestinon, Cellcept and IVIG and I felt a little improvement, but sadly, a few years the affects of the medications wore off.  After years of pleading for an alternative medication solution, my doctor wrote down on his prescription pad Amifampridine Phosphate (3,4 Dap), 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 disorder is so rare.   

I got home and on the computer and found Phoenix Barrows Neurological Institute and called the Drs. Research office immediately.  The Barrows team was so excited to treat me and get me on the trial, ASAP! I flew out the following week, passed the physical and relocated from Philly to Phoenix for three months to start the Catalyst’s clinical study using Amifampridine Phosphate (3,4 Dap).

 Twenty minutes after my first dose I was able to walk steady, chronic fatigue faded away, energy level picked up face lifted up, my balance came back, and I walked around the hotel driveway.  I drove to a supermarket and shopped without a motorized cart!

Prior to “correct” treatment, people would judge me based on how I walked, talked and moved about (drugs, Alcohol). I can see how people would think that, but it was hurtful.  If a policeman saw me walking, I would be stopped.  Being 6’2 and staggering, it was hard to blend in. 

Now life is good!!  I am thankful to the support of my husband and daughters, who helped me every step of the way, and I am forever grateful to the TEAM at Barrows Clinic that saved the quality of my life.

LEMS is rare.  I lost 11 years of quality life, and I have making up to do.  Lesson learned: Take control of your own heathcare!

 

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Help others learn about Lambert-Eaton Myasthenic Syndrome (LEMS) by sharing your story. Your personal journey will help inspire and connect other LEMS patients and inform rare disease stakeholders and the public about this rare, autoimmune disease. Raising awareness through story-telling is an effective way to advocate! Email Global Genes to learn more.