Russell's Multiple Sclerosis Campaign
Donation protected
I'm Russ and here's my story.....On September 27, 2013 I asked my best friend to marry me. She said YES! We started planning the wedding almost immediately
Early February, I went to the doctors because of a sharp pain in my arm. He then, referred me to a specialist. He gave me a brace to wear at night, but the pain was not going away. Over the next few weeks the pain progressed to the point that whenever I would put on a jacket, it felt as if razor blades were cutting into me. It was so painful. I couldn't feel anything, the numbness in my fingertips made it difficult for me to everyday simple stuff like buttoning my shirt.
Then came the hug... One day I noticed a "hugging" sensation so fierce I could not even breathe on my own. I spent 3 days in the hospital and another 3 trips to the Emergency Room. It was the worst pain I have ever felt in my life. I had to spend 16 hours in a tub just to ease the pain. Their testing during my stay lead me to another specialist.
I had my first MRI in March 2014. As soon as the results came back they immediately knew something was wrong. They called me in about a week later after determining the cause of all this pain and numbness. The nurse practioner then told me the news, "you have multiple sclerosis." She told me it's not a death sentence but I couldn't focus on anything in the room at that point. They told me that this requires special attention immediately. Off to another specialist.
The Director of Yale Neurology had requested me because this was a serious case. I guess he couldn't believe I was walking! He said I had multiple active lesions on my brain and spine and scars left from the ones that have been doing damage for years. He immediately had me draw 40 vials of blood for tests and perform a new MRI. In one short month the lesions were getting bigger and the numbness was getting worse. I lost all feeling in my hands and it's spreading to my face and feet.
The blood test results determined that I was not an option for the "miracle" drug called "Tysabri" due to being JC Positive. This could be more harmful than good for people like me. They wanted to act quickly so they started a steroid infusion immediately. This is only a quick band-aid fix until they can approve another infusion treatment for cancer patients called "Rituxan". This one is even scarier than the first! There is a laundry list of side effects associated with this treatment.
Each infusion is roughly $20,000. The stack of medical bills sitting on my table totals way over $100,000 and that was just to get a diagnosis. I have insurance but they only pay some of the bills, not all. They are starting to deny treatments and procedures because it is just too costly.
I'm asking for a little help from my friends and family for any kind of donation they can spare. I lost a lot. I lost my ability to play guitar and ride a motorcycle. The bills keep coming in and my income keeps going out. Between the wedding in September 2014 and my treatments I am in a monetary medical stranglehold. Between the multiple misdiagnosis and time off from work it has been a very tough 6 months. My goal is the pay they past due bills so I can continue my treatment. Any help does not go unnoticed and is extremely helpful.
Early February, I went to the doctors because of a sharp pain in my arm. He then, referred me to a specialist. He gave me a brace to wear at night, but the pain was not going away. Over the next few weeks the pain progressed to the point that whenever I would put on a jacket, it felt as if razor blades were cutting into me. It was so painful. I couldn't feel anything, the numbness in my fingertips made it difficult for me to everyday simple stuff like buttoning my shirt.
Then came the hug... One day I noticed a "hugging" sensation so fierce I could not even breathe on my own. I spent 3 days in the hospital and another 3 trips to the Emergency Room. It was the worst pain I have ever felt in my life. I had to spend 16 hours in a tub just to ease the pain. Their testing during my stay lead me to another specialist.
I had my first MRI in March 2014. As soon as the results came back they immediately knew something was wrong. They called me in about a week later after determining the cause of all this pain and numbness. The nurse practioner then told me the news, "you have multiple sclerosis." She told me it's not a death sentence but I couldn't focus on anything in the room at that point. They told me that this requires special attention immediately. Off to another specialist.
The Director of Yale Neurology had requested me because this was a serious case. I guess he couldn't believe I was walking! He said I had multiple active lesions on my brain and spine and scars left from the ones that have been doing damage for years. He immediately had me draw 40 vials of blood for tests and perform a new MRI. In one short month the lesions were getting bigger and the numbness was getting worse. I lost all feeling in my hands and it's spreading to my face and feet.
The blood test results determined that I was not an option for the "miracle" drug called "Tysabri" due to being JC Positive. This could be more harmful than good for people like me. They wanted to act quickly so they started a steroid infusion immediately. This is only a quick band-aid fix until they can approve another infusion treatment for cancer patients called "Rituxan". This one is even scarier than the first! There is a laundry list of side effects associated with this treatment.
Each infusion is roughly $20,000. The stack of medical bills sitting on my table totals way over $100,000 and that was just to get a diagnosis. I have insurance but they only pay some of the bills, not all. They are starting to deny treatments and procedures because it is just too costly.
I'm asking for a little help from my friends and family for any kind of donation they can spare. I lost a lot. I lost my ability to play guitar and ride a motorcycle. The bills keep coming in and my income keeps going out. Between the wedding in September 2014 and my treatments I am in a monetary medical stranglehold. Between the multiple misdiagnosis and time off from work it has been a very tough 6 months. My goal is the pay they past due bills so I can continue my treatment. Any help does not go unnoticed and is extremely helpful.
Organiser
Russell J Schell IV
Organiser
West Haven, CT
