BethU
Extremely helpful member
- Joined
- May 11, 2008
- Messages
- 2,646
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- California
- City
- Los Angeles
Hi, all ...
I can't believe I have questions about my diagnosed again, but I am wondering if other people get a diagnosed of ALS in writing.
The issue has come up because my niece, who is taking time off work to run errands for me, needs proof of my diagnosed for her employer so she can get paid for family leave.
I had understood that in order to be treated at UCLA, all my test results would be evaluated by a neuro, then I would be referred to a Dr. Graves who would evaluate me further in person and perhaps do other tests, and then on the basis of his evaluation I would be assigned to a treating neuro.
However, I had such a hard time getting past the UCLA appointment desk even for the first-stage review ("call back Monday, call back Thursday, we don't have your paperwork, we do have your paperwork but it's being evaluated, we've lost your paperwork, call back Thursday, call back Monday" ... 6 weeks of this) that I decided to cash in my 401K and get evaluated at Cedars, where I could be seen quickly. I told my ALS Assoc. rep that I was giving up on UCLA, and she pulled strings, and got me an appointment to see a neuro at UCLA the very next day!
But the only "proof" I have that I have ALS is what the neuro told me in person at the conclusion of my second EMG, and his written report, which states: "This (test result) is consistent with a diagnosis of amyotrophic lateral sclerosis. Electrodiagnosis of myasthenia gravis is difficult to establish, since ALS is also associated with mild degree of decremental response on nerve conduction. Clinical correlation is suggested."
I had previously been diagnosed with Myasthenia Gravis based on my symptoms only: shortness of breath, slurred speech, problems swallowing, blurred & double vision, and respiratory failure requiring entubation and 3 weeks hospitalization last December.
I'll send the report to my niece and hope her employer won't read it too carefully, as it seems to me that the neuro who conducted the EMG was hedging his bets in writing. Anyway, I am now being treated at UCLA for ALS, based on this EMG, but there has not been any further evaluation of my situation.
My question is: Do PALS generally get their diagnosed in writing? How else do we "prove" to employers that we've got it?
BethU
I can't believe I have questions about my diagnosed again, but I am wondering if other people get a diagnosed of ALS in writing.
The issue has come up because my niece, who is taking time off work to run errands for me, needs proof of my diagnosed for her employer so she can get paid for family leave.
I had understood that in order to be treated at UCLA, all my test results would be evaluated by a neuro, then I would be referred to a Dr. Graves who would evaluate me further in person and perhaps do other tests, and then on the basis of his evaluation I would be assigned to a treating neuro.
However, I had such a hard time getting past the UCLA appointment desk even for the first-stage review ("call back Monday, call back Thursday, we don't have your paperwork, we do have your paperwork but it's being evaluated, we've lost your paperwork, call back Thursday, call back Monday" ... 6 weeks of this) that I decided to cash in my 401K and get evaluated at Cedars, where I could be seen quickly. I told my ALS Assoc. rep that I was giving up on UCLA, and she pulled strings, and got me an appointment to see a neuro at UCLA the very next day!
But the only "proof" I have that I have ALS is what the neuro told me in person at the conclusion of my second EMG, and his written report, which states: "This (test result) is consistent with a diagnosis of amyotrophic lateral sclerosis. Electrodiagnosis of myasthenia gravis is difficult to establish, since ALS is also associated with mild degree of decremental response on nerve conduction. Clinical correlation is suggested."
I had previously been diagnosed with Myasthenia Gravis based on my symptoms only: shortness of breath, slurred speech, problems swallowing, blurred & double vision, and respiratory failure requiring entubation and 3 weeks hospitalization last December.
I'll send the report to my niece and hope her employer won't read it too carefully, as it seems to me that the neuro who conducted the EMG was hedging his bets in writing. Anyway, I am now being treated at UCLA for ALS, based on this EMG, but there has not been any further evaluation of my situation.
My question is: Do PALS generally get their diagnosed in writing? How else do we "prove" to employers that we've got it?
BethU