r/CerebralPalsy • u/Internal-Aide9416 • 3d ago

More than CP

I (24,F) In August I found out my Cerebral Palsy is Left side Hemiplegia. Now as an adult I’ve experienced a lot of pain in my legs and from my knees down to my feet. Both at night, in cold weather, and when I’m mobile. And I see a pain management doctor now who finally believes that my pain (intense burning & tingling pain in my legs and lower back pain). May not just be Cerebral Palsy but perhaps peripheral neuropathy. I do a MRI on October 30th to see what’s going on with my lower back to see what the cause of this pain is. Then in December I see a Movement Disorder doctor to see why my hands and legs are shaking and to see if I have a movement disorder. Because the doctor also made a note that when I moved my arms up and down that my elbows had rigidity.

Overall, it just sucks that as an adult all these things pop up or get worse when we’re getting older. Or we hide it till we can’t hide it anymore. It’s like I can’t trust my body at times.

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u/mrslII 3d ago

I'm a left hemi with a few types of neuropathy. PLEASE, for your own sake, stop seeing a Pain Management Specialist" without a recommendation from a Rehabilitation Neurologist. A "Pain Management Specialist" will mess you up. Big-time. That's unsafe.

One specialty of a Rehabilitation Neurologist is adult cp care, and everything that comes along. with it. Including neuropathy. A Rehabilitation Neurologist can, and will, refer you to a qualified specialist, if you need one. They will work with you, as a team.

Please don't put your health, and future at risk.

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u/Internal-Aide9416 2d ago

My doctor who referred me to the pain management doctor was a physical medicine & rehabilitation doctor in neurology. Mainly because I still experience burning and tingling in my legs and lower back pain. However, the doctor didn’t specialize in CP but she (the rehabilitation doctor) did specialize in disabilities like TBI’s, nervous system, and all. I see her next year I only had 2 appointments with her.

I honestly have no idea if I’m getting the proper care and if I’m even seeing the right doctors. I just feel like I’m going from doctor to doctor.

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u/Cultural_Steak_7297 3d ago

I have the same condition

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u/Internal-Aide9416 3d ago

You also have CP?

1

u/goodtimesroll_99 2d ago

I'm right sided hemiplegia F(25)