tripete
Very helpful member
- Joined
- Dec 5, 2014
- Messages
- 1,002
- Reason
- PALS
- Diagnosis
- 12/2014
- Country
- US
- State
- PA
- City
- Lancaster
There is a ton of information on this site that you can access to try and get answers. And while posting questions is allowed, until you are diagnosed it becomes a burden upon those who are caring for people with ALS and it is something that most of us with ALS do not want to deal with.
We all had to go through the very lengthy process involved to get diagnosed and while we appreciate your struggle with the process, it is just to much for us to have to read the way most of you are almost insisting that you have this horrendous disease.
In my case I believe that I am maybe two months to a few weeks away from passing away and answering these questions is not the way I want to spend my time. So private messages with questions is just to much.
Remember it is very unlikely that ALS is what you have. Please work with your doctors and I beg you not to let up until you find your answers but do not keep pushing for answers from people who are suffering.
When the doctors tell you something listen to them, yes study hard as you are your best advocate, but do not place your difficulties on those who are struggling to get through every day.
Finally if you are bent on it being ALS review the El Escorial criteria for ALS. Work with your doctor to see if you meet these criteria, as we cannot tell you if you are plagued by this nightmare.
We all had to go through the very lengthy process involved to get diagnosed and while we appreciate your struggle with the process, it is just to much for us to have to read the way most of you are almost insisting that you have this horrendous disease.
In my case I believe that I am maybe two months to a few weeks away from passing away and answering these questions is not the way I want to spend my time. So private messages with questions is just to much.
Remember it is very unlikely that ALS is what you have. Please work with your doctors and I beg you not to let up until you find your answers but do not keep pushing for answers from people who are suffering.
When the doctors tell you something listen to them, yes study hard as you are your best advocate, but do not place your difficulties on those who are struggling to get through every day.
Finally if you are bent on it being ALS review the El Escorial criteria for ALS. Work with your doctor to see if you meet these criteria, as we cannot tell you if you are plagued by this nightmare.