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Advocating for yourself and your LEMS!
Hey all!
While we have been on the subject of raising awareness for LEMS, I thought it would be important to talk about advocacy for both yourself and other patients!
Have you been treated poorly by a medical professional because of your diagnosis? If so, how did you handle this?
Do you feel you are a strong advocate for yourself? What about for others?
If you do, what things have you done to advocate for yourself or others?
When I was first diagnosed in 2015, I began spending a lot of my free time researching LEMS. My neurologist had ordered a CT scan to check for malignancies, but my research led me to several articles that stated a PET scan should also be preformed in the first year after diagnosis as well. Turns out, PET scans are more thorough and detect tiny abnormalities that a CT scan could miss. Since LEMs can be caused by a malignancy, a lot of times the diagnosis of LEMS comes before a cancer diagnosis. This is because at the time of diagnosis, the tumor could possibly be too small to detect. So, that’s why researchers suggest we should be closely monitored for the first few years after diagnosis! I contacted my doctor and asked for a PET scan after showing him the studies I found and he obliged. I ended up having a small area of concern in my nasopharynx that I had to have biopsied, but it ended up being inflamed adenoid tissue.
Recently there was a great article posted by Mary Chapman on Lambert-Eaton Myasthenic Syndrome News about advocacy and things/tools you can use to become a better advocate!
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