Closer0043
New member
- Joined
- Apr 21, 2024
- Messages
- 5
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- IL
- City
- Chicago
I was also recently diagnosed with thoracic outlet syndrome after a year of seeing 2 neurologist, 2 neurosurgeons, an endocrinologist, an ENT, my primary care doctor, and 2 trips to the ER. I was convinced I had ALS for about 5 months a year ago. I still can’t hold a remote control at my TV for more than 30 seconds without having to rest my arm.
The sad part about this is I mentioned TOS to my primary care doctor a year ago, and he dismissed my self diagnosis immediately. All he had to do was give me a simple ROOS test that I recently failed miserably when seeing a sports medical doctor. I was officially diagnosed by an ultrasound technician that showed my heart monitor go flat line on the screen when lifting my right arm straight up. I could see the monitor myself. The technician actually thought the monitor must have fallen off my middle finger and made me do it again.
The other discouraging part of this missed diagnosis for over a year is the fact that all of my doctors know that I play a ton of baseball and have been doing so for the past 50 years. TOS is very common in baseball players and athletes who make the same repetitive motions like tennis and swimming. Plus, many doctors still don’t believe it really exist and the ones who do dismiss the fact that it can cause neurological issues like I have like brain fog, fatigue, dizziness, facial numbness. I still haven’t found anything that explains the body wide cramping and twitching I had ladt year, but maybe I had more than one thing going on. If anyone wants to read more about thoracic outlet syndrome, this is the most extensive website I have found. My next step is an appointment on March 20th with a vascular surgeon who hopefully has a plan to heal this. Good luck!
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The sad part about this is I mentioned TOS to my primary care doctor a year ago, and he dismissed my self diagnosis immediately. All he had to do was give me a simple ROOS test that I recently failed miserably when seeing a sports medical doctor. I was officially diagnosed by an ultrasound technician that showed my heart monitor go flat line on the screen when lifting my right arm straight up. I could see the monitor myself. The technician actually thought the monitor must have fallen off my middle finger and made me do it again.
The other discouraging part of this missed diagnosis for over a year is the fact that all of my doctors know that I play a ton of baseball and have been doing so for the past 50 years. TOS is very common in baseball players and athletes who make the same repetitive motions like tennis and swimming. Plus, many doctors still don’t believe it really exist and the ones who do dismiss the fact that it can cause neurological issues like I have like brain fog, fatigue, dizziness, facial numbness. I still haven’t found anything that explains the body wide cramping and twitching I had ladt year, but maybe I had more than one thing going on. If anyone wants to read more about thoracic outlet syndrome, this is the most extensive website I have found. My next step is an appointment on March 20th with a vascular surgeon who hopefully has a plan to heal this. Good luck!
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