‘LEMme Tell Ya’ Patient Stories in Their Own Words: Betty Ann Lasley
When I published my first blog post for “The Battle Within,” I was thrilled to receive a comment from a woman in Dallas named Betty Ann Lasley. Not only did Betty Ann become a fan of my blog, she became a very dear friend of mine.
At my first Lambert-Eaton myasthenic syndrome (LEMS) patient meetup in Kansas City, Missouri, I was surprised to learn that the beautiful woman across the table praising my writing was Betty Ann.
We’ve since attended multiple rare disease events together. She is beautiful, kind, and the the life of the party. She also is the one person in my life to say: “Keep writing, Dawn. You have a gift.”
Betty Ann has many gifts as well. No matter the challenge, she radiates positivity. She is the reason I continued with my blog, which led to writing this column. It is fitting that my final patient story for 2019 be about Betty Ann, in her own words.
From left, Dawn DeBois and Betty Ann Lasley at the Global Genes Summit in 2018. (Courtesy of Orange Box Photo Booth)
Betty Ann, you lived a very busy life leading up to your LEMS diagnosis. Can you tell us a bit about that?
I grew up as a modern dancer and taught it for years. I worked as a VP of sales and marketing for a Belgian company traveling the world, when at around 65 I began to experience the symptoms of LEMS. It changed my life. Diagnosis after diagnosis came up with all sorts of interesting things. I forged ahead until I found the “wonder doctor” who knew a thing or two. Life has certainly changed, and although the treatments are scarce and minimal, I have forged ahead. Now it is almost impossible to travel the world, and I must consider where there are steps and appropriate seating.
Betty Ann and her late husband, Bob Steiman, in 2009. (Courtesy of Betty Ann Lasley)
How do you approach the challenges that LEMS brings to your life?
I smile and keep moving — no one wants to hear you complain. I still teach at a local college and, with my walker in hand, I teach those coeds that a handicap doesn’t get you down. I explain about rare diseases, and hopefully I have inspired one or two to think about such things. I try to work with Global Genes and the LEMS community to keep the interest up as well as hope in finding a cure and better treatments. I’m game to try anything.
What words of wisdom do you have for LEMS patients who may be overwhelmed by the extra work that the holidays require?
There are times when I think I’m a genius, and as I live alone, there’s no one to dispute me. It all began two weeks ago. Someone said Christmas is almost here — oh, no, time to put up the tree and all the “stuff” now in boxes on high shelves in the garage. But wait a minute — as a LEMS patient, to lift and bend and get on ladders is next to impossible. What shall I do? I do love Christmas and wouldn’t want to disappoint my grandchildren by not having all the festivities. I will repeat: I think I’m a genius. It dawned on me that I have five grandchildren, ages 13 to 17. Aha, perfect ages for a festive tree-trimming party and brunch. So one Sunday morning not too long ago, we all ate quiche, set up trees and “stuff,” decorated, and had a wonderful meeting of the cousins while I sat in my favorite chair, directed the entourage, and sipped coffee! Genius!
Betty Ann enlisted her grandchildren to help her decorate. Clockwise from left, Sophia Lasley, Loren Lasley, Beckam Nichols, Betty Ann, Larsen Nichols, and Sutton Lasley. (Courtesy of Betty Ann Lasley)
To all of you suffering from LEMS: “Where there is a will, there is a way,” as my mother used to love to say. Her other idiom was, “Don’t cry over spilled milk!” We are all suffering from this very debilitating rare disease which has come to us from who knows where and keeps us wondering what will happen next. It does seem at times that we have no control. I disagree! We can smile and say “onward” and work toward learning to live with LEMS in good humor and good heart. Ask for help from those who love you. Everyone loves to decorate a Christmas tree.
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Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.
About the Author
Comments
Stephanie Weisinger
My name is Stephanie. In August of 2018 I had what I call the "weird spell" that started this all. I was in the kitchen cooking breakfast when I started feeling nauseated. I broke out into a sweat down my back and became extremely dizzy!! When I say dizzy it was beyond dizzy. I tell you this was the worst case of vertigo ever!!! My world was spinning around at a rapid speed. I walked back to my room falling down a few times and bumping into walls. I initialy thought it was low blood sugar and I tried to eat some peanut butter and drink a sprite which did not help at all. I laid down and it did not improve. Unfortunately, this "spell" lasted approximately 6 hours.Yes, 6 hours of extreme vertigo. When it was over I was exhausted. Like I had ran a marathon. I was so very exhausted to the point that I had to lean on the wall to hold myself up. I decided that I probably needed to see a neurologist. My father had a stroke at the young age of 57 so many things ran through my head about what could have happened to me that day. I was having some weird symptoms. Slurred speech, extreme fatigue, vertical diplopia, eye drooping, insomnia, depression...did I mention the extreme fatigue? It didn't end there. The dry mouth, dry eyes and constipation were and still are rough!! Worst dry mouth anyone could ever imagine. I have always suffered from migraine headaches so I wasn't new to that symptom. The lightheadedness was something completely new. Some days it felt like my head weighed a ton and I had a hard time keeping it balanced on my shoulders (if that makes any sense at all). My legs have "ached" and been "restless" all of my life. I had bacterial meningitis at the age of 4 so everyone in my family just contributed my headaches, leg issues and low back pain to that. When I was a child I would be unable to walk due to the leg pain. I would have to army crawl my way into my parents room due to the inability to walk so leg weakness and pain have always been an problem for me. I just lived with it.
Anyway, due to my history and my family's history I decided that after my severe vertigo spell and with all these weird symptoms coming on so rapidly I should probably see a neurologist. I scheduled my appointment which ended up being cancelled due to the neurologist having a family emergency. I found a different neurologist with a completely different medical group that was able to get me in right away. Well, let me say this, when they tell you don't rush things, they really mean it! This first guy was a JERK!!! My first neurologist appointment left me feeling very uneasy. He placed me on a low dose of verapamil and ordered a CT angio, which was negative of course. When I returned for my check up this guy seemed very dismissive to me and my husband. He really didn't want to answer any questions. He placed me on a higher dose of the verapamil and basically couldn't tell me why. He just didn't want to hear me at all. He didn't care. My husband and I sat there very puzzled. I remember how humiliated this doctor made me feel by asking a simple question "Could I have MS?" This man looked at me and laughed and said to me and my husband "people don't hurt when they have MS" It was almost like he was mocking me or making fun of my questioning. He decided to send me on my way. I just took the medicine and said oh well....it is what it is. It was about two weeks later that I got a call confirming a neurologist appointment with the first neurologist that I had made the first appointment with. (remember the first one that had to cancel on me) I almost told them no forget it but something told me to go ahead and go for it. This new neurologist was AMAZING with me. He spent approximately 3 hours with me. I broke down and cried during the assessment with his resident who examined me first before he came in. Especially while telling him how embarrassed I get when my speech is slurred. When the actual neurologist came in he completed his examine he was so sweet and so understanding. He took the time to do a very thorough investigation then told me he thought I had Myasthenia Gravis. He ordered the testing. I got my results back and the test showed the antibodies for the lambert-eaton myasthenia instead. I have spent the last year and a half going through TONS and TONS of test with many different specialist. Autonomic dysfunction testing, 4 different EMG test, multiple lab test including HIV, Hepatitis testing, Various CT and MRI of my brain and inside of my ears, lip biopsy for Sjogrens syndrome, lumber punctures, paraneoplastic testing and on and on and on....sometimes my labs are normal and sometimes they are abnormal and weird but none of them have given definite answers. I saw a specialist at the University of Texas Southwestern in Dallas (UTSW) and she does not believe I have LEMS because my EMGs have all been good and my autonomic dysfunction testing was normal. However, my labs have shown two times that I have the PQ Calcium channel antibodies present AND I have all these odd symptoms. Each specialist I see blames the symptoms on medication I'am taking or my gastric sleeve surgery which was actually after all my symptoms began.
My neurologist will not dismiss the myasthenia and truly believes I have LEMS. He won't give up on me. He knows something is going on. He tells me he doesn't always trust the EMG and wants to be very diligent with my lung CT and scans. I guess we shall see...it has been a long and exhausting process and I feel so defeated. I just want answers. I recently started seeing a hematologist/oncologist due to my WBC counts dropping to 3.3 of course they did come up to 4.8 and we will continue to watch this. I guess there isn't anywhere else to go from this point. I have what they consider the NASA workup. I will add that I'm a nurse so I advocate and push harder than alot of others probably do.
Any insight you may have to guide me in a different direction is greatly appreciated.
BETTY ANN Lasley
Stephanie, I am assuming you live in Dallas. I would love to talk with you personally about all of this as I am a LEMS patient too and there are very few of us. There are a couple possibilities you might try. I will see how we can get together virtually as right now I'm sure you're in quarantine as am I. Take care and hopefully we can talk soon. Hang in there and stay safe. Betty Ann Lasley
Dawn DeBois
Hello Stephanie,
I'm so sorry for all you have been going through. Unfortunately, it is very common for LEMS patients to go through years of progressive symptoms that don't fit into any one particular "box" that providers expect with certain diagnosis', which can lead to delay in diagnosis. I've added a question in our Lambert Eaton News Forums today for patients to post who their diagnosing neurologists were and their location as this could be helpful for you and for many other patients. Please consider joining the forums!
Many of the things you mentioned were very familiar to me- I suffer from migraines and vertigo as well. My LEMS has affected my autonomic system and I understand completely the type of exhaustion you are describing. I have 6 other autoimmune diseases that were diagnosed prior to LEMS, so my neurologist was pretty confident my LEMS was autoimmune. My CT scan was clear.I'm glad they are watching you closely, especially with everything else going on.
As far as the EMG- that has been a challenge many patients have undergone. Fortunately, with the approval of Firdapse, the PI indicates that it was tested on patients who either had a positive EMG or P/Q antibody test, they did not need to have both. Perhaps you could forward the PI to your neurologist who is still questioning the LEMS diagnosis? They notate the patients studied in Section 14: Clinical Studies.
Thank you for reading my column and for your comments. Please join us in the Forums so even more LEMS patients, besides Betty Ann and myself, can be of assistance and support to you.