Well - after nearly two weeks, I am finally back from the Mayo clinic!
They found out what is wrong with me - so its a good news/bad news sort of thing.
I have neurofibromatoses - or NF. You can read about it here:
NF is basically you body making these little tumors inside your body. As well as other minor symptoms.
I have a varient of Type 1 NF - called Mosaic. That means that hopefully it will stay only in one area (my pelvis/lowerback). However, it may in fact spread to other parts of my body. Technically, I dont CLINICALLY have NF - as there are 7 symptoms of NF - and you need 2 of them to be able to say you have NF. So I am in the grey area - where I have it - but I dont officially have it.
The doctors were super great. This one surgeon was one of like six doctors who specialize in removing NF tumors from nerves. The genetisist I saw was developing a drug that HALTS the growth of NF tumors.
They decided my leg pain WAS from tumors compressing nerves in the sacrum area. The problem is, that area is your bladder/bowel control also. So they risk me having to poo in a bag if something goes wrong during surgery (or other unplesentness). They decided that if I can manage my pain on painkillers, then to just live with them untill they become a real problem.
So that is what I am doing. I am on some stuff now - but going to see a Pain Management Specialist in Kansas City soon. Hopefully I can get a cocktail that will keep me up and moving with out pain! Already the stuff I am on has made me more alive and have more energy!
Most of the tests were OK - but the EMG they made me do SUCKED. They shock your leg, making it jump (and hurt), to see what nerves are working and how. THen they stick a thin long needle in your muscles and make you flex them. It measures the electrical current being sent to that muscle. Ugh - that was an icky test.
Now the real bad news is, I have a 5% chance that a tumor will grow to be malignaent - ie Cancer. Thats bad- as my prognosis would not be good. I also have a chance to pass this on to any kids I have. They did a DNA test to see if its genetic, passed down from my parents - or if it was a mutation of my DNA after conception. If its genetic, I have a 50% chance of passing it - if its a mutaion I have a 5-50% chance. The thing is, NF could be a few freckels, or disfiguring tumors. There is no way to tell how severe it will be. So thats something that I will think about later.
Other than that - I am doing well. Thanks to everyone who was supportive and wished me well!
Oh and I will be getting on making AO look more like AO ASAP!
Steve
They found out what is wrong with me - so its a good news/bad news sort of thing.
I have neurofibromatoses - or NF. You can read about it here:
NF is basically you body making these little tumors inside your body. As well as other minor symptoms.
I have a varient of Type 1 NF - called Mosaic. That means that hopefully it will stay only in one area (my pelvis/lowerback). However, it may in fact spread to other parts of my body. Technically, I dont CLINICALLY have NF - as there are 7 symptoms of NF - and you need 2 of them to be able to say you have NF. So I am in the grey area - where I have it - but I dont officially have it.
The doctors were super great. This one surgeon was one of like six doctors who specialize in removing NF tumors from nerves. The genetisist I saw was developing a drug that HALTS the growth of NF tumors.
They decided my leg pain WAS from tumors compressing nerves in the sacrum area. The problem is, that area is your bladder/bowel control also. So they risk me having to poo in a bag if something goes wrong during surgery (or other unplesentness). They decided that if I can manage my pain on painkillers, then to just live with them untill they become a real problem.
So that is what I am doing. I am on some stuff now - but going to see a Pain Management Specialist in Kansas City soon. Hopefully I can get a cocktail that will keep me up and moving with out pain! Already the stuff I am on has made me more alive and have more energy!
Most of the tests were OK - but the EMG they made me do SUCKED. They shock your leg, making it jump (and hurt), to see what nerves are working and how. THen they stick a thin long needle in your muscles and make you flex them. It measures the electrical current being sent to that muscle. Ugh - that was an icky test.
Now the real bad news is, I have a 5% chance that a tumor will grow to be malignaent - ie Cancer. Thats bad- as my prognosis would not be good. I also have a chance to pass this on to any kids I have. They did a DNA test to see if its genetic, passed down from my parents - or if it was a mutation of my DNA after conception. If its genetic, I have a 50% chance of passing it - if its a mutaion I have a 5-50% chance. The thing is, NF could be a few freckels, or disfiguring tumors. There is no way to tell how severe it will be. So thats something that I will think about later.
Other than that - I am doing well. Thanks to everyone who was supportive and wished me well!
Oh and I will be getting on making AO look more like AO ASAP!
Steve
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