I recently spent some time chatting with three new people who were recently diagnosed with ECD (Erdheim Chester Disease). They were speaking with me as if I was an expert, but the fact is it hasn't even been a year since I was first diagnosed.
It is amazing how fast one becomes an "expert" when one needs to be.
Since I was informed that I had this disease (that seems to be a cross between cancer and a autoimmune disorder) it has hampered the proper functioning of my pancreas, blocked my spleen, invaded my testes, caused bone hardening, and spread throughout my retro peritoneal cavity.
The medication I am taking to stop the growth of the ECD is called Kineret (it is injected daily) and it seems to be working. There is no hope for a cure at this point, a standoff is the best that can be hoped for. Unfortunately the side effect of this drug is that it has destroyed my immune system. This along with a whole bunch of random genetic immunological deficiencies I found out about while at the NIH does leave me a little concerned about my ability to stay infection free over the long run.
The doctors have also diagnosed me as having pancreatic enzyme deficiency and I have started to take medication that should help me eat a more varied diet. The idea is the enzymes will help my body process the food I am eating and help me maintain/gain weight. The problem is I don't think its working (my stomach hurts right now as I type this). Fact is the more normal food I eat the worse I seem to be feeling.
I have been experiencing a lot of muscle weakness and fatigue recently but haven't brought it up with the doctor yet. I just don't want to deal with them for a while. I would guess that this is related to my diagnosis at the NIH of having low testosterone, but since I am not a candidate for testosterone replacement therapy I'm not sure there is anything that can be done about it.
So I would say my current status is stable with problem areas that need to be addressed in the next 3-6 months. I need to see a immunologist, gastroenterologist, hematologist, urologist, and stop in at JHU for my 6 month exam. Don't feel like doing any of it at this point. I think that with some medical issues being proactive is a waste of time because none of these schlubs really want to get involved until things are bad.
It is amazing how fast one becomes an "expert" when one needs to be.
Since I was informed that I had this disease (that seems to be a cross between cancer and a autoimmune disorder) it has hampered the proper functioning of my pancreas, blocked my spleen, invaded my testes, caused bone hardening, and spread throughout my retro peritoneal cavity.
The medication I am taking to stop the growth of the ECD is called Kineret (it is injected daily) and it seems to be working. There is no hope for a cure at this point, a standoff is the best that can be hoped for. Unfortunately the side effect of this drug is that it has destroyed my immune system. This along with a whole bunch of random genetic immunological deficiencies I found out about while at the NIH does leave me a little concerned about my ability to stay infection free over the long run.
The doctors have also diagnosed me as having pancreatic enzyme deficiency and I have started to take medication that should help me eat a more varied diet. The idea is the enzymes will help my body process the food I am eating and help me maintain/gain weight. The problem is I don't think its working (my stomach hurts right now as I type this). Fact is the more normal food I eat the worse I seem to be feeling.
I have been experiencing a lot of muscle weakness and fatigue recently but haven't brought it up with the doctor yet. I just don't want to deal with them for a while. I would guess that this is related to my diagnosis at the NIH of having low testosterone, but since I am not a candidate for testosterone replacement therapy I'm not sure there is anything that can be done about it.
So I would say my current status is stable with problem areas that need to be addressed in the next 3-6 months. I need to see a immunologist, gastroenterologist, hematologist, urologist, and stop in at JHU for my 6 month exam. Don't feel like doing any of it at this point. I think that with some medical issues being proactive is a waste of time because none of these schlubs really want to get involved until things are bad.
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