franklind
New member
- Joined
- Jun 22, 2018
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CA
- City
- San Diego
It is difficult to consicesly summarize my story and symtpom progression but I will try my best.
My symptoms started a couple months before I turned 27, and I turned 29 a few days ago.
Because of the nature and progression of my symptoms, I am convinced my condition is terminal.
It all started with sharp muscle strains that were painful (stomach, back of head). I thought nothing of it. A few months later I began having chest pains, discomfort in my thoracic and cervical spine, tingling along my jawline, and abnormalties with my swallowing.
All labs and imaging normal. Then my symptoms began to spiral out of control.
I started to get muscle twitching and stiffness in my limbs, initial onset more predominant on the left side of my body. After weeks of stiffness, I began experiencing weakness. This slowly progressed and I was/am certain my left side was losing muscle mass accompanied by weakness. My left leg with brief reflexes and left arm with absent reflexes. I also experienced ulnar nueropathy. For over a year, my left side was only affected; however, the same progression is now taking course on the right side.
Fast forward, I am no longer working and barely function. Severe thoracic and cervical spine pain and what I see and feel to be the muscle supporting my spine wasting away. I have difficulty holding my head up and have constant arthritis (crepitus) in my neck. I have also have forearm narrowing and my only 'abnormal' lab is slightly elevated creatinine (yikes). I also have difficulty speaking; my voice cracks, is hoarse, and my tongue is scalloped with a crack down the middle.
To put in context, I was once a college football player and excersised vigoursly 3-4 times a week before this all started so it's difficult for me to hear doctor's say they can't find anything when I can no longer get on a treadmill. I am now bedridden and can no longer work. I have seen probably 30 doctors combining of GPs, specialists, and natropaths. Every and any 'treatment' modality I have tried has been unsuccssesful and I have spent a 'small' fortune trying to take my life back.
Most notably, I did see a neurologist at the Mayo Clinic October 2019 and he noted 'no convincing evidence of neurological disease' which is MIND BLOWING to me. My experience with this neurologist felt like a student who forgot to do his homework and was rushing to get it done 30 minutes before class. He noted my EMG was clean. I have a follow-up 21 January 2019 but feel like every doctor (specifically neurologist) I have seen is playing hot potato with me since they don't want to be the bearer of bad news. I also understand that a doctor likely won't diagnose anything until I can no longer walk.
I really appreciate those who listen to my story and respect your opinions.
My symptoms started a couple months before I turned 27, and I turned 29 a few days ago.
Because of the nature and progression of my symptoms, I am convinced my condition is terminal.
It all started with sharp muscle strains that were painful (stomach, back of head). I thought nothing of it. A few months later I began having chest pains, discomfort in my thoracic and cervical spine, tingling along my jawline, and abnormalties with my swallowing.
All labs and imaging normal. Then my symptoms began to spiral out of control.
I started to get muscle twitching and stiffness in my limbs, initial onset more predominant on the left side of my body. After weeks of stiffness, I began experiencing weakness. This slowly progressed and I was/am certain my left side was losing muscle mass accompanied by weakness. My left leg with brief reflexes and left arm with absent reflexes. I also experienced ulnar nueropathy. For over a year, my left side was only affected; however, the same progression is now taking course on the right side.
Fast forward, I am no longer working and barely function. Severe thoracic and cervical spine pain and what I see and feel to be the muscle supporting my spine wasting away. I have difficulty holding my head up and have constant arthritis (crepitus) in my neck. I have also have forearm narrowing and my only 'abnormal' lab is slightly elevated creatinine (yikes). I also have difficulty speaking; my voice cracks, is hoarse, and my tongue is scalloped with a crack down the middle.
To put in context, I was once a college football player and excersised vigoursly 3-4 times a week before this all started so it's difficult for me to hear doctor's say they can't find anything when I can no longer get on a treadmill. I am now bedridden and can no longer work. I have seen probably 30 doctors combining of GPs, specialists, and natropaths. Every and any 'treatment' modality I have tried has been unsuccssesful and I have spent a 'small' fortune trying to take my life back.
Most notably, I did see a neurologist at the Mayo Clinic October 2019 and he noted 'no convincing evidence of neurological disease' which is MIND BLOWING to me. My experience with this neurologist felt like a student who forgot to do his homework and was rushing to get it done 30 minutes before class. He noted my EMG was clean. I have a follow-up 21 January 2019 but feel like every doctor (specifically neurologist) I have seen is playing hot potato with me since they don't want to be the bearer of bad news. I also understand that a doctor likely won't diagnose anything until I can no longer walk.
I really appreciate those who listen to my story and respect your opinions.
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