Als or Something Else?

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JBelland43

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Hello,

My name is John, I am 43 years old, married with 3 children 13, 6, and 4. Over the last 6 months I've been to more Dr appointments than I have been to my entire life prior. No one knew what was going on, some pointed to stress for a while, but most have now come around to the possibility of Als. I'm extremely interested in what this community thinks.

In May 2018, during a very stressful work situation, I hurt my back causing foot drop in my right foot. This was due to a right side impingement in my back, confirmed with MRI's. Later that year, I developed a chronic Cough with a wicked nasal drip. I also developed acid reflux (all possibly unrelated to anything als I realize) In February 2020 I felt right shoulder weakness when pitching baseballs to my son. In March 2020 I was told by a co-worker when sharing a hotel room that I completely stopped breathing at night. From March 2020 to July I found myself fatigued after dinner each night. July 2020, I had erratic BP, erratic HR, shortness of breath, diarrhea, constipation, random pains in my rib muscles, clicking and popping sounds in my lungs while breathing, insomnia, dry mouth, and what I can only describe as forgetting to breathe when trying to go to sleep. By the end of August I had lost 40 lbs which I felt was from the loss of a lot of muscle from my chest and ribs. With the weight loss I went from being able to do 30+ pushups to not being able to do any. I was having random odd chest pains throughout the day. So I got on a cpap for my CNS breathing, took a stress test of my heart that came back normal. Over the next several months I was also found to have orthostatic hypotension, constant constipation, urinary Issues, high ketone levels, then I lost 15 more lbs and all of my joints are now popping and grinding (very little pain though). A little over a month ago I noticed fasciculations in my calves along with shaky fingers in my left hand. Both are constant symptoms and have not gotten better. It appears a lot of muscle has been replaced by fat in my calfs. The fingers that shake have gotten smaller. I am also stumbling a lot when I walk, scuffing the bottom of my foot on the ground 4-5 times a day. I am unsteady on my feet. My neck back core and ankles feel very weak now and I sometimes shake a bit when I use the muscles. Currently also feeling random muscle twitching all over except for my face. Saw a neurologist, 3 spinal MRI's back normal, antibody blood work back normal, previously saw rheumatologist all blood panels normal, metabolic panels normal and electrolytes normal. Multiple doctors have described my knee reflexes as brisk with the rest being normal. Scheduled for EMG on January 7th. I realize if this is Als it would fit the respiratory onset version, but I sat down with my PCP and went through all the diseases that mimic Als and almost all are ruled out. Left on the table are neurosyphilis (long shot), brain tumor (but no headaches, long shot). He and I don't see much else. After 6 months of craziness, I'm losing my mind, and very interested in the long shot that someone with respiratory onset als can confirm or deny the possibility or think of something else to look into.

Thank you for your time and consideration.

John
 

Nikki J

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It really doesn’t sound like ALS. The Emg will give you an answer for sure. If it isn’t ALS ( my expectation) then your next stop should be a University level medical center if you are not already attending one. Something is wrong but it is unclear what. You are negative for covid antibodies?
 

lgelb

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Have you seen a pulmonologist/had pulmonary function testing since you started on CPAP?
 

JBelland43

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I had an initial visit with pulmonologist, scheduled for testing middle of January.

Yes, I just had a negative antibody test in December.
 
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