I am not sure if this is the best venue for this topic and if not my biggest apologies, but its a true story regarding what I have been going through and talking and writing about it has been very therapeutic for me so hear goes.
Several of you already know about my health scare I have had the last couple months. Long story short for those who do not, I was having very concerning neurological symptoms, and sadly the time it takes to get to see a specialist leaves a scared, worried person with only one resource to turn to, Google. Which often brings you to the very worst possible scenario, in my case, ALS.
Everyone knows what a horrific terminal disease ALS is but for me it was not until I was forced to deal with the fear of having it that I found out more about it. The time it takes to see a specialist, get examined, have tests scheduled, wait for results can be excruciating. As well, being diagnosed or cleared can be so difficult and painfully slow as well. Not only is there NO cure, hardly any type of treatment, but there is also no blood or imaging test that can tell you definitively that you have it or not. They base a diagnosis largely by ruling other things out and following your symptoms. I can honestly say I have never been so scared about anything my entire life. Getting by on anxiety medication and alcohol most days.
2 months into this, MRI, MRA of the brain, MRI of the C-spine, Xray of spine, dozens of blood tests, Nerve study, 2nd and 3rd opinions I am being told by all I do not "Fit The Criteria" for an ALS diagnosis. As refreshing as hearing those words are I am a geeky, techy, science guy and with out having that definitive negative test result in my hand I am still having a tough time getting that negative voice in my head to stop telling me something is being missed.
I read somewhere ALS was discovered 150 years ago and since then we have lost some of our greatest athletes, scientists as well as people of our communities, loved ones and friends to this horrible illness and in over a century there has been no advancements at all.
But there is a tiny glimmer of hope recently, because of dedicated doctors, scientists, organizations as well, all the good that came from the Ice Bucket Challenge. I believe there are more than a dozen drug trials about to start and they are working day and night on an accurate test that will help get people in treatment in its earliest stages to hopefully increase quality of life and survival time. But that is still years away probably.
I am writing about my situation for two reasons, one because its helpful to me mentally and secondly to ask everyone for a huge favor, that if it is at all possible to donate as much as you can to one of the links below to help advance detection, treatments and ultimately a cure for ALS. I know its asking a lot and I totally understand if you can not. However if you can or cant, PLEASE pass this along to anyone and everyone you know that may be able to help financially and ask them to pass it along to everyone they know. I am not a big social media person but if you or someone you know is maybe spreading the word we can help raise money and be apart of something big in our own way.
5,000 people in the USA alone are given this diagnosis every year and they all need our help and hope. Every dollar will help Thank you,
http://asjfoundation.com/
http://www.alsa.org/
Several of you already know about my health scare I have had the last couple months. Long story short for those who do not, I was having very concerning neurological symptoms, and sadly the time it takes to get to see a specialist leaves a scared, worried person with only one resource to turn to, Google. Which often brings you to the very worst possible scenario, in my case, ALS.
Everyone knows what a horrific terminal disease ALS is but for me it was not until I was forced to deal with the fear of having it that I found out more about it. The time it takes to see a specialist, get examined, have tests scheduled, wait for results can be excruciating. As well, being diagnosed or cleared can be so difficult and painfully slow as well. Not only is there NO cure, hardly any type of treatment, but there is also no blood or imaging test that can tell you definitively that you have it or not. They base a diagnosis largely by ruling other things out and following your symptoms. I can honestly say I have never been so scared about anything my entire life. Getting by on anxiety medication and alcohol most days.
2 months into this, MRI, MRA of the brain, MRI of the C-spine, Xray of spine, dozens of blood tests, Nerve study, 2nd and 3rd opinions I am being told by all I do not "Fit The Criteria" for an ALS diagnosis. As refreshing as hearing those words are I am a geeky, techy, science guy and with out having that definitive negative test result in my hand I am still having a tough time getting that negative voice in my head to stop telling me something is being missed.
I read somewhere ALS was discovered 150 years ago and since then we have lost some of our greatest athletes, scientists as well as people of our communities, loved ones and friends to this horrible illness and in over a century there has been no advancements at all.
But there is a tiny glimmer of hope recently, because of dedicated doctors, scientists, organizations as well, all the good that came from the Ice Bucket Challenge. I believe there are more than a dozen drug trials about to start and they are working day and night on an accurate test that will help get people in treatment in its earliest stages to hopefully increase quality of life and survival time. But that is still years away probably.
I am writing about my situation for two reasons, one because its helpful to me mentally and secondly to ask everyone for a huge favor, that if it is at all possible to donate as much as you can to one of the links below to help advance detection, treatments and ultimately a cure for ALS. I know its asking a lot and I totally understand if you can not. However if you can or cant, PLEASE pass this along to anyone and everyone you know that may be able to help financially and ask them to pass it along to everyone they know. I am not a big social media person but if you or someone you know is maybe spreading the word we can help raise money and be apart of something big in our own way.
5,000 people in the USA alone are given this diagnosis every year and they all need our help and hope. Every dollar will help Thank you,
http://asjfoundation.com/
http://www.alsa.org/
