tripete
Very helpful member
- Joined
- Dec 5, 2014
- Messages
- 1,002
- Reason
- PALS
- Diagnosis
- 12/2014
- Country
- US
- State
- PA
- City
- Lancaster
Today marks the second anniversary of my first ALS diagnosis. We lived in Northeast Georgia at the time and had traveled home to Pennsylvania for the long Thanksgiving weekend. On Sunday of that weekend we drone form Pennsylvania down to see Dr. Pulley in Jacksonville, Florida for our Monday morning appointment. I had been trying to get into the ALS clinic in Atlanta but they where not returning calls.
I had been on the diagnostic roller coaster for over a year and a half, knowing that something was wrong with my breathing. Finally after every specialist know to man had poked and prodded me my local neurologist found issues in my EMG and said that I needed to see a muscular neurologist with the hint of ALS being the problem.
The first hour of the appointment went well. Dr Pulley joked and told me and my wife that he was certain it was not ALS. I had plenty of strength, my FVC was 150% etc.. Then came the EMG. His demeanor completely changed. We heard all the "scratchy" noises on the machine, saw the strange patterns and Dr. Pulley went silent. After a while and three total of hours he told us that he was now certain that it was ALS. The EMG showed problems in all muscle groups. The only ones he did not check where in my face. He said he could but did not see any point in it. He wrote me a letter on the spot of my diagnosis, told me to get Medicaid and Social Security Disability started.
On the way in to his office, coincidentally Atlanta had called me back. I told them I would call them back and I did and set up a second opinion appointment for the next week. It confirmed Dr. Pulley's diagnosis and added that it was respiratory onset. We moved back to Pennsylvania in February and the ALS department in Hershey gave me a third positive diagnosis.
So here I am. In this journey I have learned how little the medical community knows about anything. They are for the most part nice people but that does not change their ignorance. The equipment they supply us with is antiquated and extremely expensive.The federal Govt. (I am not a Vet) just doesn't care. We are on our own. This community has supplied me with more answers than have any other resources.
Life stinks with ALS. It is simply a waiting game for the next foot to drop. I try and help and love my family, but each day it gets harder as my life becomes more and more depleted. This is the worst anniversary ever.
I had been on the diagnostic roller coaster for over a year and a half, knowing that something was wrong with my breathing. Finally after every specialist know to man had poked and prodded me my local neurologist found issues in my EMG and said that I needed to see a muscular neurologist with the hint of ALS being the problem.
The first hour of the appointment went well. Dr Pulley joked and told me and my wife that he was certain it was not ALS. I had plenty of strength, my FVC was 150% etc.. Then came the EMG. His demeanor completely changed. We heard all the "scratchy" noises on the machine, saw the strange patterns and Dr. Pulley went silent. After a while and three total of hours he told us that he was now certain that it was ALS. The EMG showed problems in all muscle groups. The only ones he did not check where in my face. He said he could but did not see any point in it. He wrote me a letter on the spot of my diagnosis, told me to get Medicaid and Social Security Disability started.
On the way in to his office, coincidentally Atlanta had called me back. I told them I would call them back and I did and set up a second opinion appointment for the next week. It confirmed Dr. Pulley's diagnosis and added that it was respiratory onset. We moved back to Pennsylvania in February and the ALS department in Hershey gave me a third positive diagnosis.
So here I am. In this journey I have learned how little the medical community knows about anything. They are for the most part nice people but that does not change their ignorance. The equipment they supply us with is antiquated and extremely expensive.The federal Govt. (I am not a Vet) just doesn't care. We are on our own. This community has supplied me with more answers than have any other resources.
Life stinks with ALS. It is simply a waiting game for the next foot to drop. I try and help and love my family, but each day it gets harder as my life becomes more and more depleted. This is the worst anniversary ever.