Newly diagnosed

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helenasalv

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Oct 8, 2021
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DX MND
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I was recently diagnosed with ALS. Still hoping this could be paraneoplastic syndrome since I had just been diagnosed with breast cancer in September/2020. I had surgery in November/2020 and again in December/2020. In January/2021, I started slurring and had little trouble swallowing liquids. Neurologist thought I may have myasthenia gravis. EMG said otherwise. In may, I started having twitching in my tongue and throat. I feel perfectly fine otherwise. Went to MAYO clinic in Jacksonville and one neuro thought it could be associated with my cancer. All tests came out negative and the ALS Neurologist diagnosed me with ALS.

Has anyone else out there had cancer or surgery right before diagnosis of ALS?
 

affected

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lala land
really sorry to be welcoming you.
If an ALS neuro diagnosed you by clinical exam and EMG then you can still rightly seek a second opinion.
Cancer and or surgery right before diagnosis really is just a chance thing. I may be wrong, but I don't think any members here have had a similar thing. Certainly they aren't linked as such.
We will try to help answer any questions you have, we just don't always have perfect answers for everything.
 

lgelb

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So sorry to welcome you, Helena. We would always recommend a second opinion, even if Mayo Jax did the initial diagnosis. That is even more true with your history. Did the tests include imaging of your brain, bones, and lungs? You are welcome to post the EMG (de-identified) for comment if you'd like.

Best,
Laurie
 
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