Possible Parkinson : I am 66 female, AMN gene... - AMN EASIER

AMN EASIER

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Possible Parkinson

tropicalflower profile image
17 Replies

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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tropicalflower profile image
tropicalflower
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17 Replies
AussieBob profile image
AussieBob

Why when you have AMN

tropicalflower profile image
tropicalflower in reply to AussieBob

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

AussieBob profile image
AussieBob in reply to tropicalflower

You have typical AMN symptoms

tropicalflower profile image
tropicalflower in reply to AussieBob

I also have spasticity.

tropicalflower profile image
tropicalflower in reply to tropicalflower

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

Thank you

AussieBob profile image
AussieBob in reply to tropicalflower

Exactly. Who is your neurologist

tropicalflower profile image
tropicalflower in reply to AussieBob

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

AussieBob profile image
AussieBob in reply to tropicalflower

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

tropicalflower profile image
tropicalflower in reply to AussieBob

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!

AussieBob profile image
AussieBob in reply to tropicalflower

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

KazzyALD profile image
KazzyALD

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

Cherie profile image
Cherie

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.

StevenSims profile image
StevenSims

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

tropicalflower profile image
tropicalflower in reply to StevenSims

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.

monkeybus profile image
monkeybus

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.

tropicalflower profile image
tropicalflower in reply to monkeybus

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

LessThanRich profile image
LessThanRich

I used sinemet, but cannabis is better.

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