- Joined
- Jan 17, 2017
- Messages
- 16
- Reason
- PALS
- Diagnosis
- 01/2017
- Country
- US
- State
- Florida
- City
- lecanto
In September 2016 I had issues the 1st week speaking so my primary VA Doctor prescribed a week long medication for laryngitis and after taking it, nothing changed.
By the end of the 1st week of October 2016 I was unable to speak, yet ENT Doctors at VA said my voice box was okay from test and muscles around them but believe its motor neurons causing issue with speaking. The first VA neurologist I saw said she believed I have ALS so she sent me to the VA ALS clinic for evaluation. The Neurologist who runs it did a EMG but only on my left side and said since I don't have carpal tunnel she didn't need to do right side.
Well after the EMG she said she believed I had PLS because I had fasciculation and no fibrillations. She then said, since I lacked fibrillation on EMG it was a better diagnoses of PLS than ALS and that it can convert to ALS at anytime!
This is the summary of EMG test as follows---- Nerve conduction studies test of the left arm and leg demonstrated borderline low tibial motor and peroneal motor amplitudes with borderline low tibial conduction velocity. Left sural sensory amplitude was markedly low. Needle examination of the left arm,leg and thoracic paraspinal muscles demomstrated fasciculation potentials in the FDI, triceps,deltoid and gastrocnemius. There were fibrillation potentials in the gastrocnemius and t6 paraspinal muscles.
Now since the report in September, in December I did a sleep study test and spirometry test which showed sleep apnea and my inhale exhale muscles have weakened and now I have a cpap for sleeping and a lung cough assist machine and one for excess saliva.
my next EMG is on the 25th of January this year but my pulmonary Doctor, one other VA neurologist and even my VA podiatrist said in my medical records my issues are from ALS. When PVA (paralyzed veterans of America) tried to get my treating neurologist and other Doctors to sign a DBQ for disability thru VA for my condition they all refused. I am confused as to what is going on and now they are talking g-tube before it gets worse.
I now use a TTY phone and waiting on machine that will help me communicate. I'm tired of fighting the VA over this and now my treating neurologist said it takes 3-4 years before diagnoses can be done and she even increased my Bacoflen meds. I don't know what else to do!
I have read from John Hopkins school of medicine neurology that they believe that PLS is a variant of ALS and that it the rearest form of ALS. they also said that MND and ALS have different names but same disease. I have also read where they may have a new name called PLS dominate ALS. Has anyone heard of this?
By the end of the 1st week of October 2016 I was unable to speak, yet ENT Doctors at VA said my voice box was okay from test and muscles around them but believe its motor neurons causing issue with speaking. The first VA neurologist I saw said she believed I have ALS so she sent me to the VA ALS clinic for evaluation. The Neurologist who runs it did a EMG but only on my left side and said since I don't have carpal tunnel she didn't need to do right side.
Well after the EMG she said she believed I had PLS because I had fasciculation and no fibrillations. She then said, since I lacked fibrillation on EMG it was a better diagnoses of PLS than ALS and that it can convert to ALS at anytime!
This is the summary of EMG test as follows---- Nerve conduction studies test of the left arm and leg demonstrated borderline low tibial motor and peroneal motor amplitudes with borderline low tibial conduction velocity. Left sural sensory amplitude was markedly low. Needle examination of the left arm,leg and thoracic paraspinal muscles demomstrated fasciculation potentials in the FDI, triceps,deltoid and gastrocnemius. There were fibrillation potentials in the gastrocnemius and t6 paraspinal muscles.
Now since the report in September, in December I did a sleep study test and spirometry test which showed sleep apnea and my inhale exhale muscles have weakened and now I have a cpap for sleeping and a lung cough assist machine and one for excess saliva.
my next EMG is on the 25th of January this year but my pulmonary Doctor, one other VA neurologist and even my VA podiatrist said in my medical records my issues are from ALS. When PVA (paralyzed veterans of America) tried to get my treating neurologist and other Doctors to sign a DBQ for disability thru VA for my condition they all refused. I am confused as to what is going on and now they are talking g-tube before it gets worse.
I now use a TTY phone and waiting on machine that will help me communicate. I'm tired of fighting the VA over this and now my treating neurologist said it takes 3-4 years before diagnoses can be done and she even increased my Bacoflen meds. I don't know what else to do!
I have read from John Hopkins school of medicine neurology that they believe that PLS is a variant of ALS and that it the rearest form of ALS. they also said that MND and ALS have different names but same disease. I have also read where they may have a new name called PLS dominate ALS. Has anyone heard of this?
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