With my pain level increasing as I transition off of Prednisone I found myself back in Dr. Scheel's office at John Hopkins today. Fortunately he is an "expert" with ECD, unfortunately he is in Baltimore, Maryland. DawnMarie came with me and we came with a long list of questions. What I am finding though is that most of my most important questions don't have answers.
Questions (Black is me, Blue is the response):
How do we know I have ECD? The samples taken were found to contain the cells that indicate ECD, this was verified by two separate pathologists (One at NYU and the other at NIH).
Why am I on Kineret and not Interferon Alpha (a common drug used to treat this disease)? Kineret has proven to be effective in many of the cases my doctor treats, whereas he has had little luck with Interferon Alpha. Kineret has less side effects. Some doctors would say that Interferon Alpha should be the first line treatment, there is disagreement on this issue in the medical community.
Why am I loosing so much weight? No Idea. Wants me to see a Nutritionist.
Why am I in so much pain? Doctor does not believe the pain experienced when eating is related to my past Pancreatitis. In fact he believes the inflammation from the ECD mimicked Pancreatitis but that I never actually had it (he says the proof of this theory is my blood work which has never indicated I have a distressed Pancreas).Thus is is assumed that the pain is being caused by the ECD (its role in my hip and back pain is unclear).
What's Next? How will we know the treatment is working? After discussing it with the doctor it was decided I should go to the NIH (National Institute of Health) for comprehensive testing. We will use those tests in February or March to evaluate the progress made so far.
What should I take for the pain? Tramadol.
Overall It was a good trip. I have a answer to my pain management problem, at least temporarily (Tramadol). We discussed how the ECD itself is a big user of calories and that I need to eat more to meet the disease's needs and my own (easier said then done). Dr. Scheel explained that most of my pain was probably coming from the abdominal and aortic histocyte cells that are in my retroperitoneal cavity.
I am sure there will be many more unanswered questions about ECD in my future, but hey at least there will be a future for that to happen in.
Some questions that remain unanswered:
Will I ever get to stop taking Daily Shots?
Will Kineret work for me?
Will my bone pain continue to increase?
Is Tramadol going to solve my pain managment problem?
Who killed JFK?
Will this disease prevent me from working at some point?
What is the prognosis?
Questions (Black is me, Blue is the response):
How do we know I have ECD? The samples taken were found to contain the cells that indicate ECD, this was verified by two separate pathologists (One at NYU and the other at NIH).
Why am I on Kineret and not Interferon Alpha (a common drug used to treat this disease)? Kineret has proven to be effective in many of the cases my doctor treats, whereas he has had little luck with Interferon Alpha. Kineret has less side effects. Some doctors would say that Interferon Alpha should be the first line treatment, there is disagreement on this issue in the medical community.
Why am I loosing so much weight? No Idea. Wants me to see a Nutritionist.
Why am I in so much pain? Doctor does not believe the pain experienced when eating is related to my past Pancreatitis. In fact he believes the inflammation from the ECD mimicked Pancreatitis but that I never actually had it (he says the proof of this theory is my blood work which has never indicated I have a distressed Pancreas).Thus is is assumed that the pain is being caused by the ECD (its role in my hip and back pain is unclear).
What's Next? How will we know the treatment is working? After discussing it with the doctor it was decided I should go to the NIH (National Institute of Health) for comprehensive testing. We will use those tests in February or March to evaluate the progress made so far.
What should I take for the pain? Tramadol.
Overall It was a good trip. I have a answer to my pain management problem, at least temporarily (Tramadol). We discussed how the ECD itself is a big user of calories and that I need to eat more to meet the disease's needs and my own (easier said then done). Dr. Scheel explained that most of my pain was probably coming from the abdominal and aortic histocyte cells that are in my retroperitoneal cavity.
I am sure there will be many more unanswered questions about ECD in my future, but hey at least there will be a future for that to happen in.
Some questions that remain unanswered:
Will I ever get to stop taking Daily Shots?
Will Kineret work for me?
Will my bone pain continue to increase?
Is Tramadol going to solve my pain managment problem?
Who killed JFK?
Will this disease prevent me from working at some point?
What is the prognosis?
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