Learned a lot

This was helpful to listen through again, to absorb a lot of the intricacies, of "if this then that" or "if not this then that" and timing etc. 😊

When a patient has had Lyme Disease, especially one like me who wasn’t diagnosed for 5 years and the spirchetes were making lesions in my brain, pain of this type of Lyme Disease is more like demyelination in MS. I feel like my nerves are on fire, raw due to the Lyme. Now I have the dystonic form of Parkinson’s and the muscle spasms hurt. So I present with two types of severe pain and it’s gone on for almost 20 years. I am under the care of a pain specialist and I must take opiates. Currently I am on morphine. It’s very effective and more so than duragesic patches. The relief has greatly improved my ability to get sleep, and my overall quality of life. I have recently fallen and injured my coccyx. I cannot sit at all comfortably. This is discouraging, especially since I finally had consistent relief. No idea if it will any improvement. Radiologist said x ray showed no crack or break. I’m doubting the results. Maybe my coccyx is twisted out of normal position. Food for thought.

I often end up taking a magnesium and cod liver oil gel cap to reduce what I can only describe as sudden compartment syndrome. I find drinking milk also helps with that and B12, I try to not lapse into the maximum overdrive walk I tend to do out of habit from years of walking every where before experiencing the compartment syndrome just suddenly throwing me to the ground out of nowhere, starting in 2009. It (the feeling my muscles are imploding my bones) can wake me up 5-6 times when I'm trying to sleep for what would be a full sleep. I have to try to wall and furniture walk around and drink water and try to take an emergency supplement regimen I keep by the bed. I try to mitigate the situation by making myself go slower and avoiding as much of the inevitable sun exposure as possible.

In my experience it makes doctors' heads split open if you ask a question outside their area (it's not their specialty :)). this is in response to her comment that Parkinson's patients do get other diseases (yeah, we know). Try asking a psych doctor a neurological question, or vice versa. Or even ask the psych doctors to treat your sprained ankle. They can't do the paperwork....lol

@davisphinneyfdn

9 ай бұрын

Thanks for your comments. There are so many layers to this issue, from doctor shortages to insurance billing requirements. Regardless of the background, it is certainly challenging for many reasons and many people--especially when it can take so long to get an appointment.

At 9:50 she asks a confusing question about the difference in motor, or non motor dominant feature patients. What? If you don’t have motor symptoms, you don’t get a pd diagnosis at all. What is it, 2 or 3 of the 4 TRAP SYMPTOMS…… This question makes no sense to me.

I have Parkinson's (10 years now) and recently developed serious sciatic nerve pain. (from hip knee and calf) So painful that I can not walk without severe pain but if I just sit Walla! No pain.

I'm finding this very basic and almost condescending

This is nonsense, ! Parkinson's is extremely painful really on its own example I have scoliosis and arthrosis tof my spine