John

Hi Lisa,

I have not been diagnosed yet but I am certain that I have ALS. Everything else has been ruled out so I am simply waiting to find the right doc at the right time to diagnose me. Good luck on your journey.

-John-

Hi Lisa,

I am sorry about what you have been going through. Reading your post really hits home for me. I have had progressive weakness, twitching, pain, tingling and tightness all over since May 2019. I have literally had 100’s of tubes of blood tested, 5 EMGs, a muscle biopsy, spinal tap, a dozen MRIs and CT scans, etc. I have also seen about a…[Read more]

I have seen neurologists at NYU and Columbia in addition to several local neurologists here in NJ. They all said no ALS. One said possible fibromyalgia. One said possible small fiber neuropathy. One said possible unspecified autoimmune disease. Several guesses but nothing concrete. Awaiting a spinal tap to gather more info. I’m losing hope day by day.

To add to my previous post: my muscle weakness and twitching are now widespread throughout my entire body. I also have muscle cramping, tightness and pain. I have worsening jaw and neck pain which feels like nerve pain. Recently, I have experienced neuropathic itch when I get moments of bad nerve pain in my arms, hands, legs, feet, face, etc. My…[Read more]

Good afternoon all,

In May 2019, I began experiencing tingling in my left arm, hand and some on the left side of my face/head. In June 2019, I developed an intermittent left eyelid twitch. In July 2019, I started having weakness and tightness in the back of my legs. In August 2019, I developed random twitching (fasciculations) along with…[Read more]