Harbinger
New member
- Joined
- Mar 28, 2024
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CO
- City
- Denver
40y/o male, US Mil Veteran, former Paramedic; previous thread here: Being referred to multidisciplinary clinic
My symptoms began somewhere approximately in mid 2022 as I recall possibly earlier but I was not one to run to a Doctor at the first sign of a problem, nor did I because of my 'feelings'. I was a competitive athlete and small business owner when my onset began. My first noticeable symptoms were that of some hand weakness when holding my tools and a really strange leg shake in my right leg when I would lift with my right arm, despite my effort to control it, my leg would even shake when I would do dips. I thought maybe I had parkinson's disease as my family had owned a private nursery and I was frequently and often exposed to everything that supposedly causes PD. It wasn't until I was consistently dropping my small, difficult to handle tools that I decided to seek help, considering I might have a problem I cannot fix.
As 2022 progressed into 2023 my weakness grew greater and greater and my ability to suffer through the gym was dwindling, not so much from muscle fatigue except on my affected right side, but because I was constantly running out of air while exercising. I am not a smoker and couldn't make sense of this. So I went to the doctor who referred me to neuro in which they referred me to an EMG. EMG Returned Normal at this time, which is wonderful, who would want ALS? I was given a diagnosis of FND, which I am overtly aware of the implications. So I carried on assuming my old military injuries were causing new issues, which seemed plausible as I have multiple 'slightly' herniated discs, but I had lived with them for over a decade without issue, I understand we age, so I thought it could simply be that. Neurology was and is quite confident none of my issues were arising from my spinal issues, but had no particularly good answer. I began both physical therapy and neuro physical therapy at this time to adhere to their requests. I had an odd gait to begin with from significant hip injuries/repairs in the military which was their chief reasoning behind 'FND' diagnosis despite any differential diagnosis or elimination, i certainly didn't walk like the folks I have seem demonstrated w/ FND...Just slightly ataxic
However the positive EMG did not stop my one sided decline, my left remained fine while my right grew weaker and stiffer. At this time the only positive findings were extremely hyper reflexes in affected leg, elevated in arm, mild hyperreflexia in unaffected leg, extreme sacral hyperreflexia, left Babinski, right absent foot reflex and hyper gag reflex, along with Mild/Moderate Esophageal Dysphagia. Aug 2023 I had a novel episode of 'medical impossibility' when I had a severe septic arthritis in my left hip which required surgical intervention on my good leg. There was absolutely no infectious material, just a milk cartons worth of benign fluid, making the medical oddity as rare as finding a unicorn. This is not important to the possible ALS history by itself, what follows is. While in rehab, the phys therapist noticed my right foot not picking up and provided an orthotic, which was life changing because I didn't even really know what drop foot was, I didn't live on the internet trying to diagnose myself, I just did what the doctors asked.
Nov 2023 is when I began to noticeably and more and more consistently lose my voice, and I am not talking a little hoarse or some slight slurs, I began to sound like I was out of air and slightly intoxicated. February my voice had devolved entirely into a breathy, hoarse, unintelligible sound, trying to speak to robots on the phone was/is infuriating. My breathing had gotten terrible as well, I was beginning to wake up at night feeling like I stopped breathing, and my sleep declined terribly because of it, especially when I laid flat. ENT Diagnosed me in March 2024 with Spasmodic Laryngeal Dysphonia w/ tongue weakness and cranial nerve deficits after performing the exam with a nasal scope to observe my cords, but had other suspicions as to my decline being something else because I also had Full Cranial Nerve Deficits now. Urology Diagnosed me with neurogenic bladder w/ chronic constipation; I discontinued neuro phys therapy because it would take me days or more to recover now after any session, and it was only getting worse, regardless of my best efforts. I had lost my faith in neurology after not being taken seriously initially and despite another Dr's opinions and were unwilling to re-evaluate me dismissing other specialists. Neuro Psychiatry and Psychology both dismissed the initial diagnosis of FND and at this point I had lost faith in Neuro and never desired to return. Obviously not a great decision, but I am/was frustrated.
By April 2024 I had severe focal/local atrophy in my right leg, specifically lateral hamstring and gastroc, required bilateral foot orthotic support and a cane. This prompts my primary care physician to order a litany of additional blood work and other tests, a CT scan for my chest etc. CT scan comes back and I see Pulmonary, along with several sets of PFTs for lung function evaluation as I complained of breathing problems for over a year, especially with exercise and sleeping. CT scan reveals that I am likely experiencing mild aspiration pneumonia on the regular because of what they saw on the scan, PFTs reveal severe restrictive lung process akin to what is seen in Neuro Muscular disease, specifically ALS.
While waiting for referral to pulmonary, my primary care put me on oxygen 3-4lpm all day/night until the cause of my problem is discovered. My SPO2 was dropping to below 80% with walking and trying to talk. My best friend also had to move in with me to help take care of my daily chores and take me to appointments because I could no longer drive with R sided drop foot. Finally in June 2024 I see a Pulmonary Dr for the first time, being a medical researcher at one of the best hospitals out here, he also took the time the night before to read my medical history and wrote notes (FIRST DOCTOR TO DO THIS). He tells me he thinks I might have ALS, I tell him that is impossible because my EMG, both times were normal despite my atrophy, though my atrophied areas were never really specifically tested (i know other regions can reveal the problems of a muscle without direction intervention into the defunct muscle). The pulmonary doctor says 'Normal EMG, does that mean you don't have ALS? I don't think so', I replied with "but everyone online, especially in the ALS forums said if your EMG is normal, you don't have ALS'. He told me of the gold coast standards which clearly 99% of neurologists and doctors are unaware of. Unfortunately I am not able to see that doctor again because he was only at the clinic I visit to fill in for a missing person for a week. He told me to try and get back over to his office, but I am stuck in the black hole of insurance/drs, but rest assured I am desperately trying to find out how to get to his research hospital though I am entirely poor now. I fed my entire medical record, notes, diagnosis, the works to Chat GPT 4.0 and after it considered my entire history, it concludes as well that ALS is the most likely differential diagnosis at this point. Do I trust AI? Not entirely, but I am quite aware of its current and future use in medicine and how extremely effective it is because of it's ability to compile a lifetime of history in a moment.
Pulmonary doc ordered me some elevation pillows and told me i'd likely to need to switch a c-pap instead of free flow oxygen, but I need updated PFTS etc, which are scheduled for December 2024. Now it is Nov 2024, about 3 years in, I require a walker and walking aids, I wear oxygen, My eye doctor told me my eye muscles have aged 40 years in a single year and now wear bifocals. I can hardly move and dragging my leg around is not a way of life. I can feel my neck getting weaker and my tongue is severely scalloped, thin, and boxy (it was absolutely pristine over a year ago). I get the feeling of running out of oxygen regardless of having it on my face. More tests are ordered for the subsequent months, but less to rule anything out as I am quite sure they have ruled out absolutely everything that can be considered, and more to monitor my progression. I utilize bubbly water to hydrate and eat thicker foods now to prevent choking, which I have experienced, I have fallen as well and I certainly had episodes of light headedness OFTEN before i was placed on constant flow oxygen. I barely sleep hour a night without waking choking on spit in a cold sweat, I am taking antibiotics to prevent lung infection from aspiration issues. I understand ALS normally doesn't affect eyes or bladder, but further research has certainly exposed me to that being factually incorrect, especially in bulbar als onset cases.
Now this brings me to yesterday for my '2nd opinion' from neuro, I see a 'movement disorder specialist', which I knew was wrong and had no idea I wasn't seeing a Neuro Muscular Doctor until i was in the office. This person begins to tell me about my FND... and then tells me the other doctors, especially pulmonary doesn't know what they are talking about and wouldn't know what ALS is. THIS REALLY HAPPENED FOLKS. I asked her to tell me why I couldn't possibly have ALS, not that I want it, but at this point I need help and interventions which are kept from my reach because of a lack of definitive diagnosis. She didn't even do an exam, outside of checking my overtly Hyper reflexes, asked no questions, reviewed no history and spent less than 10 minutes with me... They re-referred me to another Neuro Muscular doctor, but I just glanced at the profiles of this person on the internet, and her reviews are anything but something to take pride in. This concerns me, I dont want to go to any more 1 star doctors....
So my question is, what do I do here? Do I ask friends for help to get to the expensive research facility, or continue on the poor mans health care system? I have an abundance of specialists suggesting ALS as the most likely cause, especially with nearly 3 years of documented progressive decline, while being gate kept by egotistical neurologists that don't want to be wrong. I don't want a terminal illness, I have a son and family, but I am also declining sometimes fast/sometimes slower, but always downhill and clearly so. My family and friends have watched me go from their hero, to a barely functioning broken person that still won't give up. The problem is, I am forced to live at home on a machine attached to my face and I will perish here. Without a diagnosis of something I will not get any interventional assistance from VA. I understand ALS patients are like snowflakes from what I have read, and because many of you have more experience with ALS than the neurologists that don't see it often, perhaps you may lend more insight? After 3 years of following doctors orders, and trying my best I am finally sick and tired of the run around, my patience is all but gone and dying does not scare me because of my faith. Thank you all for your help, consideration, and patience reading this.
I also get the fasciculations in my affected side, and now unaffected side as well in my arms and legs, also I have video recording of abdominal fasciculations as well with documented loss of singular abdominal muscles (i am very thin/low bf, my muscles are easily visualized including in my stomach) after fasciculations subsided days later. So to be clear, I get fasciculations that last minutes, hours and sometimes off and on for days with noticeable results on the affected area... I didn't have these a few years ago, these are far more recent and common the past few months. Wouldn't make note of this, if it wasn't also important!
My symptoms began somewhere approximately in mid 2022 as I recall possibly earlier but I was not one to run to a Doctor at the first sign of a problem, nor did I because of my 'feelings'. I was a competitive athlete and small business owner when my onset began. My first noticeable symptoms were that of some hand weakness when holding my tools and a really strange leg shake in my right leg when I would lift with my right arm, despite my effort to control it, my leg would even shake when I would do dips. I thought maybe I had parkinson's disease as my family had owned a private nursery and I was frequently and often exposed to everything that supposedly causes PD. It wasn't until I was consistently dropping my small, difficult to handle tools that I decided to seek help, considering I might have a problem I cannot fix.
As 2022 progressed into 2023 my weakness grew greater and greater and my ability to suffer through the gym was dwindling, not so much from muscle fatigue except on my affected right side, but because I was constantly running out of air while exercising. I am not a smoker and couldn't make sense of this. So I went to the doctor who referred me to neuro in which they referred me to an EMG. EMG Returned Normal at this time, which is wonderful, who would want ALS? I was given a diagnosis of FND, which I am overtly aware of the implications. So I carried on assuming my old military injuries were causing new issues, which seemed plausible as I have multiple 'slightly' herniated discs, but I had lived with them for over a decade without issue, I understand we age, so I thought it could simply be that. Neurology was and is quite confident none of my issues were arising from my spinal issues, but had no particularly good answer. I began both physical therapy and neuro physical therapy at this time to adhere to their requests. I had an odd gait to begin with from significant hip injuries/repairs in the military which was their chief reasoning behind 'FND' diagnosis despite any differential diagnosis or elimination, i certainly didn't walk like the folks I have seem demonstrated w/ FND...Just slightly ataxic
However the positive EMG did not stop my one sided decline, my left remained fine while my right grew weaker and stiffer. At this time the only positive findings were extremely hyper reflexes in affected leg, elevated in arm, mild hyperreflexia in unaffected leg, extreme sacral hyperreflexia, left Babinski, right absent foot reflex and hyper gag reflex, along with Mild/Moderate Esophageal Dysphagia. Aug 2023 I had a novel episode of 'medical impossibility' when I had a severe septic arthritis in my left hip which required surgical intervention on my good leg. There was absolutely no infectious material, just a milk cartons worth of benign fluid, making the medical oddity as rare as finding a unicorn. This is not important to the possible ALS history by itself, what follows is. While in rehab, the phys therapist noticed my right foot not picking up and provided an orthotic, which was life changing because I didn't even really know what drop foot was, I didn't live on the internet trying to diagnose myself, I just did what the doctors asked.
Nov 2023 is when I began to noticeably and more and more consistently lose my voice, and I am not talking a little hoarse or some slight slurs, I began to sound like I was out of air and slightly intoxicated. February my voice had devolved entirely into a breathy, hoarse, unintelligible sound, trying to speak to robots on the phone was/is infuriating. My breathing had gotten terrible as well, I was beginning to wake up at night feeling like I stopped breathing, and my sleep declined terribly because of it, especially when I laid flat. ENT Diagnosed me in March 2024 with Spasmodic Laryngeal Dysphonia w/ tongue weakness and cranial nerve deficits after performing the exam with a nasal scope to observe my cords, but had other suspicions as to my decline being something else because I also had Full Cranial Nerve Deficits now. Urology Diagnosed me with neurogenic bladder w/ chronic constipation; I discontinued neuro phys therapy because it would take me days or more to recover now after any session, and it was only getting worse, regardless of my best efforts. I had lost my faith in neurology after not being taken seriously initially and despite another Dr's opinions and were unwilling to re-evaluate me dismissing other specialists. Neuro Psychiatry and Psychology both dismissed the initial diagnosis of FND and at this point I had lost faith in Neuro and never desired to return. Obviously not a great decision, but I am/was frustrated.
By April 2024 I had severe focal/local atrophy in my right leg, specifically lateral hamstring and gastroc, required bilateral foot orthotic support and a cane. This prompts my primary care physician to order a litany of additional blood work and other tests, a CT scan for my chest etc. CT scan comes back and I see Pulmonary, along with several sets of PFTs for lung function evaluation as I complained of breathing problems for over a year, especially with exercise and sleeping. CT scan reveals that I am likely experiencing mild aspiration pneumonia on the regular because of what they saw on the scan, PFTs reveal severe restrictive lung process akin to what is seen in Neuro Muscular disease, specifically ALS.
While waiting for referral to pulmonary, my primary care put me on oxygen 3-4lpm all day/night until the cause of my problem is discovered. My SPO2 was dropping to below 80% with walking and trying to talk. My best friend also had to move in with me to help take care of my daily chores and take me to appointments because I could no longer drive with R sided drop foot. Finally in June 2024 I see a Pulmonary Dr for the first time, being a medical researcher at one of the best hospitals out here, he also took the time the night before to read my medical history and wrote notes (FIRST DOCTOR TO DO THIS). He tells me he thinks I might have ALS, I tell him that is impossible because my EMG, both times were normal despite my atrophy, though my atrophied areas were never really specifically tested (i know other regions can reveal the problems of a muscle without direction intervention into the defunct muscle). The pulmonary doctor says 'Normal EMG, does that mean you don't have ALS? I don't think so', I replied with "but everyone online, especially in the ALS forums said if your EMG is normal, you don't have ALS'. He told me of the gold coast standards which clearly 99% of neurologists and doctors are unaware of. Unfortunately I am not able to see that doctor again because he was only at the clinic I visit to fill in for a missing person for a week. He told me to try and get back over to his office, but I am stuck in the black hole of insurance/drs, but rest assured I am desperately trying to find out how to get to his research hospital though I am entirely poor now. I fed my entire medical record, notes, diagnosis, the works to Chat GPT 4.0 and after it considered my entire history, it concludes as well that ALS is the most likely differential diagnosis at this point. Do I trust AI? Not entirely, but I am quite aware of its current and future use in medicine and how extremely effective it is because of it's ability to compile a lifetime of history in a moment.
Pulmonary doc ordered me some elevation pillows and told me i'd likely to need to switch a c-pap instead of free flow oxygen, but I need updated PFTS etc, which are scheduled for December 2024. Now it is Nov 2024, about 3 years in, I require a walker and walking aids, I wear oxygen, My eye doctor told me my eye muscles have aged 40 years in a single year and now wear bifocals. I can hardly move and dragging my leg around is not a way of life. I can feel my neck getting weaker and my tongue is severely scalloped, thin, and boxy (it was absolutely pristine over a year ago). I get the feeling of running out of oxygen regardless of having it on my face. More tests are ordered for the subsequent months, but less to rule anything out as I am quite sure they have ruled out absolutely everything that can be considered, and more to monitor my progression. I utilize bubbly water to hydrate and eat thicker foods now to prevent choking, which I have experienced, I have fallen as well and I certainly had episodes of light headedness OFTEN before i was placed on constant flow oxygen. I barely sleep hour a night without waking choking on spit in a cold sweat, I am taking antibiotics to prevent lung infection from aspiration issues. I understand ALS normally doesn't affect eyes or bladder, but further research has certainly exposed me to that being factually incorrect, especially in bulbar als onset cases.
Now this brings me to yesterday for my '2nd opinion' from neuro, I see a 'movement disorder specialist', which I knew was wrong and had no idea I wasn't seeing a Neuro Muscular Doctor until i was in the office. This person begins to tell me about my FND... and then tells me the other doctors, especially pulmonary doesn't know what they are talking about and wouldn't know what ALS is. THIS REALLY HAPPENED FOLKS. I asked her to tell me why I couldn't possibly have ALS, not that I want it, but at this point I need help and interventions which are kept from my reach because of a lack of definitive diagnosis. She didn't even do an exam, outside of checking my overtly Hyper reflexes, asked no questions, reviewed no history and spent less than 10 minutes with me... They re-referred me to another Neuro Muscular doctor, but I just glanced at the profiles of this person on the internet, and her reviews are anything but something to take pride in. This concerns me, I dont want to go to any more 1 star doctors....
So my question is, what do I do here? Do I ask friends for help to get to the expensive research facility, or continue on the poor mans health care system? I have an abundance of specialists suggesting ALS as the most likely cause, especially with nearly 3 years of documented progressive decline, while being gate kept by egotistical neurologists that don't want to be wrong. I don't want a terminal illness, I have a son and family, but I am also declining sometimes fast/sometimes slower, but always downhill and clearly so. My family and friends have watched me go from their hero, to a barely functioning broken person that still won't give up. The problem is, I am forced to live at home on a machine attached to my face and I will perish here. Without a diagnosis of something I will not get any interventional assistance from VA. I understand ALS patients are like snowflakes from what I have read, and because many of you have more experience with ALS than the neurologists that don't see it often, perhaps you may lend more insight? After 3 years of following doctors orders, and trying my best I am finally sick and tired of the run around, my patience is all but gone and dying does not scare me because of my faith. Thank you all for your help, consideration, and patience reading this.
I also get the fasciculations in my affected side, and now unaffected side as well in my arms and legs, also I have video recording of abdominal fasciculations as well with documented loss of singular abdominal muscles (i am very thin/low bf, my muscles are easily visualized including in my stomach) after fasciculations subsided days later. So to be clear, I get fasciculations that last minutes, hours and sometimes off and on for days with noticeable results on the affected area... I didn't have these a few years ago, these are far more recent and common the past few months. Wouldn't make note of this, if it wasn't also important!
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