FightingAttorney10
Active member
- Joined
- Oct 29, 2013
- Messages
- 50
- Reason
- PALS
- Country
- US
- State
- Florida
- City
- Yulee
I tried to respond to you Joe, but the moderators seem to not want to let my post through. I have seen several neuros over the years but in all reality and in my opinion I think they are worthless. My main Neuros are Doctor Steven Scelsa at Beth Israel and Dr. Boylan at Mayo. I have not been to clinic in about 3.5 years because in my opinion it is about as worthless as an automobile without gasoline. I am not a candidate for a pacer because I was diagnosed with torso onset about 4.5 years ago, and my diaphragm is ok via sniff test and nerve test, but my torso is shredded thus my fvc is lower than the 50% mark and a pacer would not help my situation anyways. I get my pulmonary issues managed by Doctor Jonathan Bach who has many patient's alive and well 20-30 years after diagnosis. Most Neuros like to hand out a death sentence, and treat Pals differently from vent dependent quads. Do you know we are still considered terminal even if we vent? Other SCI victims are not, I think that is a bit of medical discrimination. I am a routine member of ALSTDI, but just came over here to try to convince Pals not to cut their lives short based upon misguided information. Now I am not going to lie, survival long term comes down to having the money to be able to do so, and well a little bit of luck. I am indeed an attorney licensed in the State of Florida and I want to change the system because the FDA is a mess, and as a whole we face major medical discrimination. -Kristopher R. Reilly, Esq. State of Florida
