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Diagnosing “Autoimmune LEMS”: how long before your neurologist was comfortable with saying yours was autoimmune based?
New LEMS patients are rightfully nervous that cancer is the cause. CT scans and PET scans are scheduled for every 6 months for a few years for many. For some of us, however, our neurologists felt very comfortable with your LEMS being autoimmune based on our medical history. I was already diagnosed with 4 other autoimmune diseases prior to my LEMS diagnosis- Hashimotos Thyroiditis, Fibromyalgia, Psoriatic Arthritis, and Ankylosing Spondylitis- thus my neurologist felt very comfortable that my LEMS was purely autoimmune after just one round of scans, especially because my LEMS symptoms had been present for well over 5 years. How about you?
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Well, I’d like to think that the same applies to me. A smoking history, and with several non-cancer related lung issues over the past few years, I can’t be so comfortable to let CT scanning slide. Thanks!
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My neurologist felt strongly that it was autoimmune based and not cancer as I had been symptomatic for at least 18 years! He said, “There’s no way this is cancer!”. Followed by “You are an albino zebra! I’ve never had a patient with LEMS. This is going to be fun!” (Side note. There is only one known albino zebra in captivity – Zoe – in Hawaii! I totally think I need to go visit my soul sister!!!) Even though my neurologist was certain it was not a result of cancer, he had me visit my hemotologist to be scanned and rule it out. Thankfully I was cleared and neither doctor feels I need ongoing tests. My hemotologist recommend the AIP diet and took me off of several medications, one of which was daily asprin I was on following several DVT’s and multiple Pulmonary Embolisms following a muscle biopsy during my HUGE flare up in 2016. I recommend talking with your hemotologist about removing any medications that could be contributing to LEMS symptoms.
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