Re: fatal error

DBAL - Thanks for your message. As I said, I know how difficult this time is for you and your family. And, I'm very, very sorry. The last thing I want to do is add to that so vent away as you need to if it helps...

Respectfully, I'm just trying to say, you don't know for sure the cause and likely never will. However, If you are so sure it was the Humaworm, why didn't you run your theory by your neurologist? If you are so sure, then I would think you'd want to tell your doctor so that they can advise other doctors and the ALS research community so that your information can be researched to help other people. Maybe a cure can come out of the information if it really shows how the disease comes about and accelerates.

I absolutely agree that people need to be informed of the possibility of what could happen. As I said, on this site, people give other people advice and we have to choose whether to use that advice. I have the feeling most people go to Curezone because they are frustrated with their doctors and medical professionals. So, people try to help each other. And, I think you are trying to warn other people about what could happen if they are not careful in what they choose to do or not do. All we can each do is share our experiences. I thank you for sharing yours - and hopefully it will help other people.

You are advocating proper medical testing for people but at the same time you aren't talking with your doctor about how you think this started - to either check that they would agree (and back up your accusation) or more importantly, to have that information verified for research for other ALS patients and their families.

So little is known about the disease, and if you have stumbled upon something that really causes and/or accelerates the disease, then please, please speak up to your doctors so that other ALS doctors, research people and so on can learn from your experience.

Katherine Tweet