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A Dentist that knew his stuff
I’ve spent much of today at the emergency dentist, finally getting a tooth looked at that I cracked when I fainted and suffered my concussion. I’m lucky I only cracked a tooth!
In discussing what happened with a brand new dentist that had never met me before, before I even said LEMS or Lambert-Eaton Myasthenic Syndrome, he said “That sounds. a lot like MG?”
I was floored that I didn’t need to explain more and gave him a huge kudos. I would have hugged him if it weren’t for social distancing. He said he better know his stuff, coming from Tufts. He’s doing a rotation in the emergency dental clinic.
How about you? Have you found doctors right out of school seem to know more about LEMS or rare diseases in general? Have you had a new medical provider floor you with their understanding, especially when they aren’t a neurologist?
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3 Replies
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That’s really cool to hear, Dawn! Sadly, I will say that most people I encounter have no idea what LEMS is. Some are not even familiar with Myasthenia Gravis.
Today, I visited my orthopedic surgeon for a pre-surgical visit. I am going to be having shoulder surgery in the next few months. He had several questions about LEMS and muscle weakness. He told me that he was going to do some extensive research on LEMS to see if I should expect to have an increased recovery time due to my muscle weakness. I feel that I normally do not experience too much muscle weakness in my arms, but I did tell him it was possible that some of my muscle weakness in my arms and shoulder could be related to LEMS.
Last week when I went to physical therapy, my normal therapist was not there and I was rotated to someone I hadn’t worked with before. I was a little disappointed after my session because he was unaware of what myasthenia was and I had to explain it to him in depth after he made some comments about how “weak” I was “all over” after telling him that I was having a symptomatic day.
I know how common it is to go into a new providers office and feel scared or worried that you may be thought of as a “difficult” patient for having a rare disease with many complicated symptoms. I wonder if many of you had also had negative experiences like this. I hope that together one day we can change this by increasing the knowledge of our rare disease and make it more common knowledge. This is why I am incredibly open with many of the residents and medical students I work with. I hope that I can help share my knowledge and one day prevent such a long diagnosis period for a patient or decrease the stigma around those with chronic illnesses.
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When I was first feeling weakness and having mobility challenges I was sent to an internist. After 1/2 hour of testing and questioning he told me that it was all in my head. I was devastated thinking maybe it was. My doctor then sent me on to a neurologist. At first ms was considered and after ruling that out I went to two more neurologists with no diagnosis.
The last neurologist said that he knew of a doctor who had just graduated and specialized in muscle issues. I wasn’t going to go as I was totally frustrated and throughout this journey thinking is it in my head!!Thankfully I went, and he knew what I had within our first visit. He just had to confirm it with electrical testing done at the hospital.
This took 8 years to diagnose, a loss of a job, loss of a active lifestyle and financial repercussions.
i think about my first diagnosis (it’s all in my head) all the time and wonder if he should be told about my journey and how it affected me mentally.
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@joanneevans,
I’m so sorry you went through that. So many of us were in the same boat. They kept looking at MS with me as well for close to a decade. I’ve told many people that the most difficult part of living with LEMS was getting a diagnosis. I, too, thought it must be in my head. I had so many tests that my prior neurologist told me were “inconclusive” that turned out to have signs pointing towards LEMS. My diagnosing neurologist, when I expressed my frustration at the prior not figuring it out, told me that the diagnostic criteria was so new and LEMS is so rare, she has no way of knowing.
I do what I do, as to many of my other friends with LEMS- educating every doctor that doesn’t know LEMS- so that perhaps diagnosis’ will happen faster in the future.
Perhaps we aren’t so rare after all? Doctors just need to know the symptoms, the tests and the variability in symptoms.
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