For me, it was really gradual. Started in hand and a year later I started limping. Atrophy in calf and weakened ankle. All on my right side. Everyone is a little different.
Hay dear, So glad u get a diagnosis I have the same symptoms for four years now,no diagnosis yet My foot is drop and my wrist drop ,i cant grip things because i have weeknes in my hand it's affecting all of my left side and progress slowly. The doctors understand that something going on but thay dont know yet unfortunately. Today I'm using a kane.
@ettidan133 and @stevejackson4136 sorry for the late response (this is Pam from video). I would recommend a second opinion and ensure you see a neuromuscular neurologist. I actually had to push my neuro to be put on to IVIG to "see" if I responded. My positive response to treatment was part of diagnosis. Many neurologists have never seen a case of this disease.
Thank you for sharing your story and helping all of us rare ones feel just a touch less rare and crazy.
Great job, Pam!! ❤
Thanks Susana!
Which muscle was affected in your leg? How fast was the onset of your symptoms?
For me, it was really gradual. Started in hand and a year later I started limping. Atrophy in calf and weakened ankle. All on my right side. Everyone is a little different.
Hay dear,
So glad u get a diagnosis
I have the same symptoms for four years now,no diagnosis yet
My foot is drop and my wrist drop ,i cant grip things because i have weeknes in my hand it's affecting all of my left side
and progress slowly.
The doctors understand that something going on but thay dont know yet unfortunately.
Today I'm using a kane.
Bless you. You describe me to a “T”. Both left leg and wrist. No diagnosis since 2007
@ettidan133 and @stevejackson4136 sorry for the late response (this is Pam from video). I would recommend a second opinion and ensure you see a neuromuscular neurologist. I actually had to push my neuro to be put on to IVIG to "see" if I responded. My positive response to treatment was part of diagnosis. Many neurologists have never seen a case of this disease.
@@phiguchi7889how are you now and did you get any improvement with the injections
Exactly me. All I’ve ever gotten was an idiopathic neuropathy
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