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John replied to the topic I feel my Dr. is hiding the truth in the forum Diagnosis Information and General Questions 2 years, 3 months ago
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-
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John replied to the topic I feel my Dr. is hiding the truth in the forum Diagnosis Information and General Questions 2 years, 3 months ago
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]
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John replied to the topic How long did it take for an ALS diagnoses? in the forum Diagnosis Information and General Questions 2 years, 8 months ago
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.
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John replied to the topic How long did it take for an ALS diagnoses? in the forum Diagnosis Information and General Questions 2 years, 8 months ago
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]
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John replied to the topic How long did it take for an ALS diagnoses? in the forum Diagnosis Information and General Questions 2 years, 8 months ago
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]
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John became a registered member 2 years, 9 months ago
Hello John,
Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or even…[Read more]
Hello John, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]