A LEMS patient in the UK shares his diagnosis and treatment story
Sam Joseph, from Worcestershire, England, was diagnosed in 2023
We all know that Lambert-Eaton myasthenic syndrome (LEMS) doesn’t discriminate. Those who are affected by the disease come from all walks of life and from all over the world.
Today, I’m excited to introduce my readers to Sam Joseph, who hails from Worcestershire, England. Sam and I first “met” on a LEMS Zoom call. I recently had a chance to hear more of his story and hope you’ll be as interested by it as I was. Excerpts of our conversation follow.
LD: Hello, Sam! Please tell us about your symptoms and what led up to your LEMS diagnosis.
SJ: I had mild symptoms in autumn 2022, however it wasn’t until April 2023 that more significant symptoms were apparent. I was fortunate to have a rapid diagnosis in July 2023. In the U.K., general practitioners [GPs] provide primary care. My GP had recently diagnosed a patient with myasthenia gravis, so she recognized my symptoms and quickly referred me to a neurologist. A series of blood tests confirmed LEMS.
I experienced extreme fatigue and muscle weakness, particularly in my knees. I had vertical double vision; people had a second head appearing in their chest, which was unnerving! I experienced difficulty breathing, dry mouth and eyes, and my mobility declined. I was falling regularly and entering a LEMS crisis. My health deteriorated rapidly.
How did your diagnosis change your life?
My life has completely changed. I can no longer drive, I sleep up to 15 hours a day, and I use a wheelchair outside of my home due to fatigue and risk of falls linked to foot drop. I had to take early retirement from my nursing career.
Has LEMS affected any personal relationships with family and friends or your career?
I’ve become dependent on family to undertake daily activities. I’ve always been independent, so being suddenly dependent was difficult. One positive is that I get to spend more quality time with them.
Prior to my diagnosis, I was a mental health nurse working in dementia diagnostics. I’m unable to continue working because of fatigue and can no longer drive. I’m hopeful that I can return to some form of work once I have fully recovered from the LEMS crisis.
Can you tell us how LEMS is treated in the U.K.?
In the U.K., medical care is free at the point of use. We have a National Health Service that funds GP services, hospitals, and community-based health services. Primary care professionals are effectively the gatekeepers to access other medical professionals. A GP makes a referral to a specialist consultant, who is generally based at a hospital. The waiting period to see a neurologist varies in each region, however there is a rapid referral route available, whereby patients are generally seen within two weeks. I was fortunate to benefit from such a referral.
Most LEMS patients are treated with 3,4-diaminopyridine and pyridostigmine, alongside a steroid and immunosuppressant. Generally, [intravenous immunoglobulin (IVIG) replacement therapy] isn’t used as a regular treatment in the U.K. But it is used as a rescue treatment.
How are they treating your LEMS?
I take various medications, including 3,4-diaminopyridine, pyridostigmine, prednisolone, and mycophenolate. I receive physiotherapy and occupational therapy, and recently participated in hydrotherapy, which I found beneficial. All of my medications and other treatments are provided free of charge. I can’t access 3,4-diaminopyridine in my area, however it is available through a regional hospital. As rescue treatments, I received one course of IVIG and plasma exchange, though neither were particularly helpful.
What would you tell someone who’s been recently diagnosed?
Engage with support groups. I’ve found that both the Myaware charity here in the U.K. and the Lambert-Eaton LEMS Family Association in the U.S. provide great resources, particularly when members suggest coping strategies for living with LEMS. There is always someone with a positive message. You can learn about living positively with LEMS from those who have lived with it for years.
If possible, take someone with you to medical appointments. There is a lot of information. I write down information and questions I wish to share with medical professionals.
Keep engaged with friends and family. Remember your LEMS journey will be unique. Your treatment package will be tailored to your symptoms and may be different from other LEMS patients. Keep a diary, though I’m not very good at this! It is useful to look back at the intensity of symptoms alongside changes to treatments, activity levels, or sleep patterns.
How are you doing today?
My LEMS crisis is coming to an end. However, I’m a long way from my health and fitness prediagnosis. Prior to LEMS, I was walking a minimum of 5 to 10 kilometers [3 to 6 miles] a day. Now, I struggle to walk 10 meters due to breathlessness and muscle weakness.
I’ve tried to reengage with activities I enjoyed prediagnosis, such as watching sports. I found a local football team that plays at a stadium that is wheelchair accessible and very inclusive. Watching the Worcester Raiders has helped my mental health.
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, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.
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