A Supporter in California writes. . .
Here's how I came to learn of you and your organization: Last October, I finished a workout at the gym and noticed that my calves were twitching. I shirked it off to a new diet regimen I was embarking on, and thought nothing of it. But the twitching didn't stop. Other parts of my body started twitching, and I began to get a little worried. A quick search on Google described the possibilities, which included ALS. I spoke with a physician friend, who suggested I increase my magnesium and potassium, which I did. No change.
I tried cutting out alcohol and caffeine. No change. The twitching continued, and I started to get a little more worried. I made an appointment with a neurologist... blood tests, MRI's, physical exam - and was told if I didn't develop weakness within 6 months of the start of the twitching, the chances that it was ALS were minute.
And so I watched and waited, scared out of my mind that one day I might get out of bed and feel a little weaker than I did the day before. Any slight hitch in my step I feared might be the beginning of foot-drop.
I spent hours online looking at ALS websites, blogs, message boards, etc. looking for information. I was terrified to learn of others whose ALS started with similar symptoms to mine. I had no idea what a horrible disease ALS is (I don't think many people know), and how quickly it moves. I was horrified. One web link led to another, and eventually I learned of your son, Eric Fox, Jim Reimer, and Josh Thompson. I knew nothing of what PALS went through before this, and wept as I learned how it devastates people and their families. Cancer seems like a cake walk compared to ALS. Then I watched the 60 Minutes interview that Ben referenced in his blog, and was sickened by what I saw. That guy is sailing around on the world's largest yacht with the profits made, in part, from disallowing access to a drug that helped your son and could help others. Disgusting.
More than six months have passed, and I've not developed any appreciable weakness, so my neurologist has cleared me of ALS. Diagnosis: Benign Fasciculation Syndrome. I'm very happy for that diagnosis, as I can live with twitching muscles. I'm also very appreciative that those months of fear and uncertainty gave me a chance to learn more about ALS and those that suffer from it.
While I was waiting for a diagnosis, I learned that some PALS, like Ben, benefited from Iplex, and I took some comfort in the fact that at least Iplex was available if I were diagnosed. Now I hear that Insmed recently announced that they'll not provide Iplex to new patients, and only have enough stockpiled for two years for those currently taking it. What is wrong with these people?!? This potential lifeline for PALS is gone and I'm absolutely sick for those that had hoped to get it and now can't.
Are there plans for another Team Iplex march or movement to make Iplex available again? I'd be happy to help, if I can. What happens when the two year supply of the drug is gone? Something about that stinks of corruption. I'm glad to learn that at least some progress is being made on the stem cell front.
I tried cutting out alcohol and caffeine. No change. The twitching continued, and I started to get a little more worried. I made an appointment with a neurologist... blood tests, MRI's, physical exam - and was told if I didn't develop weakness within 6 months of the start of the twitching, the chances that it was ALS were minute.
And so I watched and waited, scared out of my mind that one day I might get out of bed and feel a little weaker than I did the day before. Any slight hitch in my step I feared might be the beginning of foot-drop.
I spent hours online looking at ALS websites, blogs, message boards, etc. looking for information. I was terrified to learn of others whose ALS started with similar symptoms to mine. I had no idea what a horrible disease ALS is (I don't think many people know), and how quickly it moves. I was horrified. One web link led to another, and eventually I learned of your son, Eric Fox, Jim Reimer, and Josh Thompson. I knew nothing of what PALS went through before this, and wept as I learned how it devastates people and their families. Cancer seems like a cake walk compared to ALS. Then I watched the 60 Minutes interview that Ben referenced in his blog, and was sickened by what I saw. That guy is sailing around on the world's largest yacht with the profits made, in part, from disallowing access to a drug that helped your son and could help others. Disgusting.
More than six months have passed, and I've not developed any appreciable weakness, so my neurologist has cleared me of ALS. Diagnosis: Benign Fasciculation Syndrome. I'm very happy for that diagnosis, as I can live with twitching muscles. I'm also very appreciative that those months of fear and uncertainty gave me a chance to learn more about ALS and those that suffer from it.
While I was waiting for a diagnosis, I learned that some PALS, like Ben, benefited from Iplex, and I took some comfort in the fact that at least Iplex was available if I were diagnosed. Now I hear that Insmed recently announced that they'll not provide Iplex to new patients, and only have enough stockpiled for two years for those currently taking it. What is wrong with these people?!? This potential lifeline for PALS is gone and I'm absolutely sick for those that had hoped to get it and now can't.
Are there plans for another Team Iplex march or movement to make Iplex available again? I'd be happy to help, if I can. What happens when the two year supply of the drug is gone? Something about that stinks of corruption. I'm glad to learn that at least some progress is being made on the stem cell front.
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