Travels with Lewy – New Unkown Symptoms

As we Lewys keep fighting and staying on our path to fight Lewy, reading updated symptom lists checking to see if it has been updated (highly unlikely) or if there is a drug interaction that may be causing the symptoms. This time mine were related to a short procedure and the use of numbing jelly. Since being diagnosed I have had 3 surgeries using anesthesia with no side effects but the numbing jelly or maybe it was just a coincidence but having lived with this cruel friend, I haven’t seen many coincidences. The day after the procedure, my head was in a constant fog my apathy level was through the roof, my legs were uncooperative, I could walk sometimes but not very far. I had what I call my Lewy headache, it feels like an electrified rope around the top of your head shooting shocks into your brain. With the exception of my legs, that is new I have had all of those symptoms before. I have heard about the leg issues but was hopeful that the leg symptoms wouldn’t affect me. I was wrong.

My legs not only stiffened up but both of my kneecaps popped out and needed to be pressed back in. There was nothing funny or pain free about this. As the other symptoms have started to fade away, my knees keep me from doing too much. I usually try to do things around the house but unfortunately, my list is growing but I will get to it soon. I have to thank my lovely wife, Amy, who has helped me so much the last 2 weeks.

The legs are a symptom, I have not seem them on a list but they will fall in with the rest of the unexplained as an Autonomic function. This is the last landing spot for symptoms that don’t seem to have another group to be welcomed into. The popping of my knees made me feel like I was walking on jelly. My upper half of body would wobble and not like weebles because I fell down.

When trying to get through this, I didn’t even try to bring it up to my Lewy friends as my Apathy was breaking the speed limit to max out. People could have told me anything from “you won the lotto” to “your house is burning down” and gotten the same response. “who cares”. I am so glad this is over and now I know of another quiver in Lewys arsenal to watch out for. To everyone, I am back and happy to be here. Trying to keep it light in the things that aggravate all of us. Keep smiling. Don’t let Lewy win.

2 Replies to “Travels with Lewy – New Unkown Symptoms”

  1. so sorry you had to go through –sounds like it was awful!!. Do you know the name of the numbing jelly they used so we can be careful to avoid it. Thank you for your posts and sharing. We are on a learning journey since my husband has been diagnosed not too long ago.

  2. Brian, how gruesome these symptoms were for you. I say “were” because I hope they never return. None of them! To any of us! To anybody.

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