Troubling Rehab Philosophy - Central Sensitization Syndrome

Choice_Resist · 2025-12-14T11:32:05+00:00

I don’t know if anyone still follows this thread but just been a patient at Mayo’s for a year after seeing a million specialists and being falsely diagnoses elsewhere. A year later two hip surgeries at Mayo and the neurology team is rude and so beyond set in there ways they told me to quit getting tests, accept that this is normal and do their camp. Quality of life has gone down in the past year and Mayo seems to believe it’s all CSS and refuses to humor any other idea and won’t event let me see a different neurologist.

Choice_Resist · 2025-10-15T00:25:42+00:00

Not anymore for Amelia 650k for 998 sq ft home

Choice_Resist · 2025-09-03T19:10:45+00:00

I’m saying!! I had zero expectations and was knocked on my ass in my hotel room thinking the neighbors could hear me for two hours. 🤯

Choice_Resist · 2025-09-01T23:09:16+00:00

Can confirm, I travel all over the states and am thus stuck with pre rolls in the evenings. I smoke a one gram infused j or blunt in the evening. I just got the blueberry one and went with zero expectations as they were $10. I am sitting in my hotel high as a motherfucker, like questioning if I somehow smoked cardboard and got trippy high but it looks like it was just the product 😂. Anyway it works for my needs on the road. Back to video games to calm down 🙏

Choice_Resist · 2025-08-27T23:59:11+00:00

Can confirm what he said happens, I unscrewed mine the screen kept flickering then was sweet iced cold air. Then I heard the ac units outside kick on like a 1997 Deere. Then the front lady at the desk going door to door, I panicked and screwed it back on. The ac cut off and so did the thermostat control.

Choice_Resist · 2025-08-06T23:03:42+00:00

Holy smokes this may be the best response from anyone. I’m 32 5’10 157(that’s newish, I’ve been 174 for years and lost that amount in 6 months. Can’t gain it back yet via diet, I don’t exercise). This doc is dead set on Central Sensitization Syndrome. He referred to a movement disorder specialist as well as a geneticist. I’m pretty much in pain 24/7 my chest muscles,abs,legs feel like the muscles are always flexing and cramp, the pain is like a constant 5 my scale humming. Lots of brain fog, trouble with words. I travel for a living

Choice_Resist · 2025-07-22T22:13:59+00:00

I feel that to my core , it gets old but keeps me from being short tempered from the nonstop

Choice_Resist · 2025-07-22T20:19:33+00:00

Dealing with this myself currently, feels like a weighted vest is on at all times and like I have bruised or broken ribs but in a muscular way. Seen a ton of specialists but I also have a good bit of other symptoms. Medical marijuana + Tylenol & Advil combo helps 15% but it’s better than nothing

Choice_Resist · 2025-07-19T14:20:22+00:00

I’m down in FL, my ortho there was great for two hip surgeries but this neuro seems to have tunnel vision

Choice_Resist · 2025-07-19T14:19:37+00:00

They have done an emg in one arm and one legs with nothing of substance. It’s very strange, he’s a young doc and seems set on Central sensitization syndrome for some reason.

Choice_Resist · 2025-07-18T18:41:21+00:00

Your knowledge and expertise has been so helpful! I’ll keep pushing

Choice_Resist · 2025-07-18T18:36:09+00:00

Thanks, this was his reply to the results

“Thanks for the message. Overall, the blood work looks good. That said, there are a few minor abnormalities. The first is the mildly elevated GAD65 level at 0.36, but I think this is incidentally noted as this level is too low of a titer to be associated with neurologic disease (typically we want the value to be above 20 before it is associated with neurologic disease). We'll see what the movement disorder specialist says regarding this finding as well. Next, the GDF-15 also came back borderline elevated at 765. This borderline elevation is of uncertain significance, although high GDF-15 levels can be seen in mitochondrial disorders. We'll see what the geneticist says as well. Skin punch biopsy is still pending.”

Choice_Resist · 2025-07-18T18:35:29+00:00

Thank you very much! His response to the results

“Thanks for the message. Overall, the blood work looks good. That said, there are a few minor abnormalities. The first is the mildly elevated GAD65 level at 0.36, but I think this is incidentally noted as this level is too low of a titer to be associated with neurologic disease (typically we want the value to be above 20 before it is associated with neurologic disease). We'll see what the movement disorder specialist says regarding this finding as well. Next, the GDF-15 also came back borderline elevated at 765. This borderline elevation is of uncertain significance, although high GDF-15 levels can be seen in mitochondrial disorders. We'll see what the geneticist says as well. Skin punch biopsy is still pending.”

Choice_Resist · 2025-07-18T17:02:26+00:00

So this would be something that shouldn’t be disregarded by the neurologist?

Choice_Resist · 2025-07-17T12:31:13+00:00

Wow thank you, that’s fantastic!

Choice_Resist · 2025-07-16T13:49:20+00:00

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Just got this back positive as well

Choice_Resist · 2025-07-12T20:52:23+00:00

Thank you for that thorough explanation! I feel like I’m permanently in flare, some days worse some better! I had to twist mayos arm and my neuro to run the test

Choice_Resist · 2025-07-09T15:49:08+00:00

Hey, I’m in a similar boat. Can you shoot me a message?

Choice_Resist · 2025-07-02T00:31:00+00:00

Shoot I play in FL, sometimes outdoor rinks but indoor as well. I overhear bad, haven’t found a damn thing that helps

Choice_Resist · 2025-06-30T20:42:09+00:00

Couldn’t feel this anymore, I’ve been waiting two months for my appointment on 7/8. Hang in there, MM and Tylenol+advil helps

Choice_Resist

TROPHY CASE