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
Why when you have AMN
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
You have typical AMN symptoms
I also have spasticity.
No tremors, but neurologist said tremors not always present. My concern is being misdiagnosed and treated for Parkinson when it is AMN
Thank you
Exactly. Who is your neurologist
We live in Vancouver, Canada. Neurologists are Dr. Kristine Chapman, Vancouver General Hospital and Dr. Tara Rastin, Movement Disorders Clinic, University of B.C..
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
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!
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
Please seek a second opinion. You certainly sound like you have typical symptoms of female AMN.
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.
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
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.
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.
Thank you, after much thought going to try Sinemet, have to do something.
I used sinemet, but cannabis is better.
Carrier and trying to start a family
8month old ALD
