Hi Colin - I'm sorry you are not feeling well today. I can relate to your problems with diagnosis (although I did come up HLA-b27 positive). I have been sick sick for almost 2 years now. At one point thought I was going to die. At one point thought I had cancer. At one point thought I had MS. Now even with the symptoms blatently obvious I had a rheumy say well it might be fibromyalgia or reiner's syndrome. I'm even the one who had them run the blood work for the HLA-b27 gene.
My point is this. The older I get the more synical I get. The older I get the more I realize no one is going to help me as much as I can help me. My opinion now after spending thousands of dollars for doctors to tell me what's wrong with me is I don't care what they have to say as long as my mri came up clear - my cat scan came up clean - ok my emg came up abnormal but I don't have the money to redo and quack doc wouldn't consult with me because I was in brain fog and got to appointment 15 minutes late. But beside that I have come to the conclusion I will have to be sick enough that a kid on the street will know what's wrong with me before a doctor will commit to a diagnosis. I'm sick and tired of being shuffled around and then because they can't or won't take the time to figure out what's wrong with you they "mark you" with phrases like you mentioned. Shame on the doctors for dismissing people so easily when you don't want to fit into the tiny little boxes they are familiar with. Ok sorry - I don't feel well today either and it felt good to vent too.
So finally after all this gibber here is my real point. One that should let you know without question if you have the AS or not. Did you try the low starch diet. Did you get the iodine and test everything you ate for a couple of weeks. Have you tried the 3 day apple diet. Did you find some relief or no. With you coming up negative on the blood test you want to make sure yourself that you are following the right path to health. It could take 10 years of damage before the docs have the physical proof they want with xrays showing fusing and deformation not to mention the other complications. I feel that if the doctors never give me their stamp of approval for AS I don't care my goal is to continue to try to keep the damage at bay by exercise and diet than. You sound very frustrated and I don't blame you. It's very hard to get doctors to "see you" when they see you.
I have been told by 4 doctors that they don't think I have AS even though after talking to my mom, cousin, other AS'ers on this forum and my symptoms are common for the disease. I am on a quest for a caring listening doctor that is willing to venture into areas that are not so common. I have found a primary doctor who doesn't "think" I have as but is willing to go along with my requests for xrays and referrals and I am going to rheumi #2 in November with hope that he is a good one.
So in the end keep up the quest - continue towards health - and do what you think is right because at the end of the day it's just you and not the docs living with your health issues. I know how you must want to put a name to your pain so that you can move forward but keep looking it may be AS but it may end up being something else too. In the meantime try the lsd I have and have never felt better in my 2 years. (today doesn't count I have a cold and the rain from ike is bothering me
. At the best it will help to relieve some of the pain and degeneration. At the worst you will eat healthier than you ever have in your life. Sorry so long winded - hope you take everything with a grain of salt. I just wish you happiness and health...Sue!
P.S. I just remembered a coworkers husband has been diagnosed with a disease very simular to AS. It also has a distinguishing marker gene. I will ask her tonight about it and post later on it. Alot of simularities when she was discussing her husbands issues and I remember having read about it on one of the websites but can't find it now...
