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AMN EASIER
926 members659 posts

Possible Parkinson

I am 66 female, AMN gene confirmed. Experiencing freezing, stuttering step when first starting to walk. No tremors. Saw a Parkinson neurologist today, she thinks I have PD, wants me to start on Sinemet. I am so confused and scared of Sinemet side effects

Thanks

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Why when you have AMN

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My gait, The freezing to start, doors, stutter stepping, my writing starts normal then goes very small.

I do have neuropathy in my feet.

I am so confused

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You have typical AMN symptoms

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I also have spasticity.

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No tremors, but neurologist said tremors not always present. My concern is being misdiagnosed and treated for Parkinson when it is AMN

Thank you

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Exactly. Who is your neurologist

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We live in Vancouver, Canada. Neurologists are Dr. Kristine Chapman, Vancouver General Hospital and Dr. Tara Rastin, Movement Disorders Clinic, University of B.C..

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Strongly recommend A/P Josh Bonkowsky Uni of Utah, A/P Keith Van Haren Stanford as the closest and far more knowledgeable than yours. Not meaning to be rude. I also read in another post about finally ruling out

ALD. That doctor is absurd not the person posting

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Thank you very much, everyone’s opinion and support is appreciated. I am grateful for the support of everyone on this site.

This is such a challenging road to travel!

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Can do intros if need be. It really should not be so difficult because its not. There are a number of us advocacy groups fighting hard to make it easier for you. We are all personally connected to the global experts. All the best my friend

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Please seek a second opinion. You certainly sound like you have typical symptoms of female AMN.

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As Bob and Kazzy says it sounds like Amn symptoms. Unfortunately we all seem to have different symptoms. I have spasticity and drop foot, and have difficulty moving if I'm cold. My writing is no where as neat as it used to be and i can have difficulty controlling my hand. Where do you live? Perhaps someone on here is near you and can help get you to see the right specialist.

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Hi,

My brother was recently diagnosed with Parkinson's after a long time trying to rule out ALD, he freezes its like a spring waiting to wind up before he walks and he has very bad shaking in is arm, you need to see a geneticist to check if you have the ALD gene to rule out AMN like my brother as there's no tests for Parkinson's!

All the best

Steve

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I have seen a Geneticist and she felt it was AMN based on family history, Genetic testing, reflexes. Still waiting for fasting Long chain fatty acids results, my non fasting was positive.

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Even for AMN, I'd try some Sinemet. A lot of people use Mucuna Pruriens, a natura source of L-Dopa. I bought some a while back but never took any.

It is sold openly on the Interweb. It is a food source, not controlled in any way.

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Thank you, after much thought going to try Sinemet, have to do something.

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I used sinemet, but cannabis is better.

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