- Joined
- Jul 29, 2017
- Messages
- 3,933
- Reason
- PALS
- Diagnosis
- 07/2017
- Country
- US
- State
- OR
- City
- Southern Oregon
This is a question recently posed by another member in another thread. I thought it would be an excellent question for discussion, so I decided to open a new thread so we could get different perspectives.
I am coming at this both as a PALS who presented with foot drop and also as a physician (board certified in both rheumatology and internal medicine) practicing rheumatolgy for 25 years (now retired ).
ALS is a rare disorder. In my years of medical practice, I saw one patient with a motor neuron disorder and whisked him off to a neurologist. Most physicians who are not neurologists either never see a case of ALS or maybe see 2-3 in their career. As we know, ALS varies so much from person to person that seeing a few cases hardly makes a doctor an expert. So it’s not high on our radar.
In my practice, most cases of foot drop seemed to come from nerve root compression in the spine, vasculitis (inflammation of blood vessels which may affect nerves), or some other injury to the peripheral nerves. It’s natural for doctors to look for the most common causes first and to see it from the perspective of their own specialty.
My own ALS presentation was weird, but I guess not that atypical from others on the forum. I kept twisting my left ankle, so I thought I had an injury that wasn’t healing properly. Then I started having muscle cramps. I rationalized I was getting older and some how compensating for the ankle injuty. First I saw a podiatrist. Later I saw an orthopedist. Then after noticing my gait was “funny” and discovering I couldn’t rise up on my toes or heels of either foot did it even occur to me that there might be an underlying neurological problem. When I became aware of fasciculations a month later, then I began to think ALS and pursued the appropriate workup, eventually arriving at the diagnosis.
If others want to share their perspectives on why it takes so long to get diagnosed, including all the bum steers and dead ends they got from various doctors along the way, here’s an opportunity.....
I am coming at this both as a PALS who presented with foot drop and also as a physician (board certified in both rheumatology and internal medicine) practicing rheumatolgy for 25 years (now retired ).
ALS is a rare disorder. In my years of medical practice, I saw one patient with a motor neuron disorder and whisked him off to a neurologist. Most physicians who are not neurologists either never see a case of ALS or maybe see 2-3 in their career. As we know, ALS varies so much from person to person that seeing a few cases hardly makes a doctor an expert. So it’s not high on our radar.
In my practice, most cases of foot drop seemed to come from nerve root compression in the spine, vasculitis (inflammation of blood vessels which may affect nerves), or some other injury to the peripheral nerves. It’s natural for doctors to look for the most common causes first and to see it from the perspective of their own specialty.
My own ALS presentation was weird, but I guess not that atypical from others on the forum. I kept twisting my left ankle, so I thought I had an injury that wasn’t healing properly. Then I started having muscle cramps. I rationalized I was getting older and some how compensating for the ankle injuty. First I saw a podiatrist. Later I saw an orthopedist. Then after noticing my gait was “funny” and discovering I couldn’t rise up on my toes or heels of either foot did it even occur to me that there might be an underlying neurological problem. When I became aware of fasciculations a month later, then I began to think ALS and pursued the appropriate workup, eventually arriving at the diagnosis.
If others want to share their perspectives on why it takes so long to get diagnosed, including all the bum steers and dead ends they got from various doctors along the way, here’s an opportunity.....