• Leslie Gafford posted an update 2 years, 7 months ago

    We are just days away from our second opinion at Mayo in Jacksonville, and I am overwhelmed by the family members who are trying to second guess the diagnosis of the neurologists. Lingering in my mind is the fact that after a camping trip in Maryland in April of 2015, with a tick found on both myself and my husband but no real knowledge of Lyme Disease, I sought help in several months prior to a diagnosis of Lyme on 10/1/2015, and I insisted that my husband be tested as well. He was deemed negative for Lyme, but we BOTH did the Doxycycline treatment for 30 days. Fast forward to late in 2016, and he starts having memory loss, cognitive issues…normal MRI, normal LABS…told “no news is good news”. Continuing to have cognitive and memory issues, he changed several meds that he was taking, but nothing changed. In early 2018, he had a fall or two that I considered unusual, but he rationalized reasons for them and moved on. In July of 2018, we were in a head on collision and he lost consciousness briefly, but he came out of it with only a broken foot and a fx of the sternum which was quite painful, but manageable. THEN, around September of 2018, the falls started getting more regular, his speech was different – slow, slurred, softer – he had trouble gripping things, startled easily, major large-scale muscle twitching, increased cognitive issues…both MRI of Brain and C-spine were done, with no abnormalities seen other than typical for a 59 yr old male. Labs of every type and origin were done – all normal. Wait-and-see appointments continued with internal medicine and neuro until finally, on 4/26/19, he had an abnormal EMG…the only test to come back NOT normal. We’ve both run the gamut of emotions and denial and anger since he was officially told it was ALS on 5/14/19, but the Lyme issue lingers in my mind as one of those sneaky mimics…in your experience, is the EMG a pretty safe detector of ALS?

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