Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group and the results are negative

Hey all,

Just thought I would share with you the results of my HLA test that I got back today. It came back negative.

So assuming I do have the dreaded AS.. which I'm fairly confident of.. I'm amongst a smalll minority of people in the world... or am I?

I also finally got back the report from the rheumy who said there is no evidence he can find yet that would indicate AS.. much as I suspected.

Basically he said none of my symptoms match up to any of the established criteria. They have some things in common with fibromyalgia but i don't match up to that either. So basically I'm on my own until sometime goes off in my body it seems.

The most accurate observation he made in his report was that I am "a serious and worried fellow." Would you blame me?

It looks like I'm headed down a long path in the coming weeks, months and years. And to be honest, I don't care for a diagnosis any time soon. If I don't have a diagnosis then i technically have nothing wrong with me.. haha. No insurance worries, nothing to tell an employer before they choose to hire you... etc.

And I don't really want any dmards or anti-tnf stuff. I want to work with my immune system, not against it. Not knocking anyone who uses them..to each their own. That may be naive of me but I just don't see it as something for me a this point.

I'm venting a bit here because i'm a bit also hurting today. I look forward to hearing your insights.

I hope you are all doing very well.

Namaste,

Colin

I like you have no test result that would indicate AS but don't fit the typical fibro picture either. But the no starch diet has given me significant relief. Have you tried it yet?
Overgrowth of bacteria in the small intestine has been found to be a factor in both fibro and IBS, so low starch diet could have a positive in pact on those conditions by decreasing food for bacteria in the gut.

Welcome to Diagnosis Limbo World, my serious and worried friend. The natives are all neurotic here, but try not to be afraid of them as they are actually quite friendly and welcoming.

In his office notes from my last visit, the rheumy noted that I seemed anxious. Duh. He'd be anxious too if every few weeks he woke up with pain in a new place while none of the old places got better.

Have you looked at the established criteria for AS as well as those for Undif Spondy? Do you think you fit the criteria? Perhaps you've mentioned it and I've forgotten, but have you had an MRI of you SI joint? An MRI would show sacroilitis sooner than an X ray.

I wish you the best, diagnosis or not, and hope you can find a treatment which works for you.

Namaste,
Karen the Anxious

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...

Hi Colin,

Sorry you're having this setback. I have a friend who was told (finally!) that he has one of the more and more common and as-yet-unclassified autoimmune diseases that they are seeing more frequently. He's had twenty years of tests, scopes, surgeries, and physical therapy. He's been told he has lupus, cancer, fibromyalgia, etc., only to be told a little later that he does NOT have those. He's also had to deal with everyone around him thinking he's just high-strung. Ha! We used to joke because people would, innocently and well-meaning though they might be, always ask him things like "have you tried...aspirin?" It's an old inside joke between us. "Oh, you're unable to walk because of the searing pain in your legs...have you tried aspirin?" LOL

At this point in his life, though he has some bitterness (constant pain will do that to a person!) and a different view of life than most people, he has carved out a life for himself and is happily married. He lives with the knowledge that, because nobody knows what is wrong with his body, there probably isn't a treatment. He's kinda got a Buddhist philosophy (well, when your life IS suffering, you don't have a lot of other options!).

Anyway, my point is that I hope you are able to find some peace of mind. It's not easy. Also, don't give up on a diagnosis. Even HLA negative folks get AS. There are subtypes of genes that are implicated. It might NOT be HLA after all, but something more subtle that they have not yet found.

OK, I am officially rambling. Just had coffee.

Take care of yourself!
~Moll

Hi Colin,
I'm sorry to hear about the negative results when you have been having such a rough time. I think many people here can relate to similar experiences while being undiagnosed.

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And I don't really want any dmards or anti-tnf stuff. I want to work with my immune system, not against it. Not knocking anyone who uses them..to each their own. That may be naive of me but I just don't see it as something for me a this point.

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No offense taken. Currently I am trying to work with my immune system instead of only trying to suppress it, and for the most part, my overall AS symptoms have been reducing. Starch doesn't appear to be the culprit for me (no offense anyone), but over-processed foods, over sweetened foods, and lifeless foods (foods lacking nutrients) are the culprit. There many sites/articles suggesting that an imbalanced nutrition intake can also cause a immune system to overact, and I have been trying to follow that theory lately. However, if it weren't for following the NSD guidelines, I would have never figured out what is working better for me now. I could send you a list of things I'm trying to do later, if you're interested in something different.

Take Care,
James.

Hi James - I will certainly agree that over processed foods is definitely an issue. I would also agree that starch is probably not the only issue of our digestive tracts/immune systems. I do know that since I have been on the nsd most of all that goes into my mouth is now not processed and very close to natural whole food with the exception that I still use an artificial sweetener. I have eliminated all grains and I now enjoy more fresh vegetables, nuts, fruits, yogurts, lean meats than I probably ever have in my entire lifetime. When I used to work in hospice I noticed the terminally ill suddenly became very interested in what went into their bodies nutrition wise. Now with this disease I understand the want to give the body every tool it needs to heal itself if possible. I have put a few links I have found not related to this site that are starting to support the starch connection. With this being still unproven who's to say that it's not the nsd that is the help but the removing of the processed foods from our diets thru the use of the nsd that is really the benefit. I don't know but I do know that by drastically changing my eating style I have greatly improved from my former symptoms. As in math there are many ways to get the correct answer to a problem. The important thing is to get the correct answer. But please feel free to share your thoughts and findings on possible other ways to help ourselves with diet that will improve us. I for one am not locked into only one idea and am open to others thoughts and experiences...looking forward to your response...Sue!

http://www.mskreport.com/articles.cfm?articleID=2911

check under Pathophysiology

http://en.wikipedia.org/wiki/Ankylosing_spondylitis#Starch-free_diet

Hi Colin,

I was wondering how you got on with your test. Keep in mind that just because it came back negative does not mean you don't have AS. I have AS despite not having the HLA gene. (If anyone out there knows how I got AS that would be helpful :-) )

Is it possible to get a second opinion? The whole rheumy world seems odd to me - over 10 yrs ago I was told I had Fibromyalgia by one and now the drs say that the rheumy must have had it wrong. (Though I have read that fibro can be diagnosed prior to AS, especially in women).

What other tests did they do? Xrays etc?

I know limbo is not a fun place to be. Hang in there and keep doing what works best for you - exercises, diet etc. You know your body best so listen to it :-)

Plum

Hi Sue,
Thanks for the interesting links. What started making me wonder if starch was actually my worst enemy or not was the fact that I can still eat potatoes, whole grain bread, rice, whole grain cereal, saltine crackers, and things like that, with no affect on my AS. Some breads do harm me, but I believe that was either because it was too refined or a little on the stale side. I never could go strict NSD because I end up with some very painful stomach/GI problems, and I have been wondering if that was because I was removing too much of the K.Pneumoniae (I also suspect a secondary condition and getting checked out soon.) High levels of starch could have an effect on me (which is also the over processed foods), but a reduced amount starch from basic healthy foods help my digestion problems, which in turn helps my AS because it's not reacting to stomach issues. The end result is my unusual version of the LSD.

Later I discovered on the internet that there are numerous things out there that could effect the way our immune systems react. One is K.Pneumoniae (and several other unwanted bugs, infections) and the other is how well our immune systems have been upkept though nutrition intake. I have a notion that for some of us, our AS may have started when our immune systems were shut down or dysfunctional and then the immune system responded in a defunct way. As a kid I used to eat basically what the average person would generally consider healthy (95% homemade meals), but as I look back, I remember that as a family we often ate the same old thing every day, making it not very healthy as far as getting all of the nutrition I needed.

So this year I have been trying to double up on my nutrition intake by good wholesome sources of nutrition, and have been experimenting with whole food type of supplements (to make up for what I can't get by eating) and have also been avoiding food allergies and food sensitivities. My diet, (or should I say my preferred diet), is made up of only unprocessed foods; meat, fruit, and vegetables... with grains and dairies treated more as small side dishes or deserts. I still do eat things I shouldn't, but I try hard to limit it or avoid it. I have even given up all but two condiments. I have also made the switch between pop and natural sparkling water and I found that corn syrup (along with other processed sweeteners) is very bad for me. I feel avoiding processed foods also reduces the risks of eating tainted foods, which could mean serious trouble for AS'ers since AS doubles as a reactive arthritis.

I'm not taking any anti-rheumatic meds anymore which is so nice for a change, but I still am still taking 'anti-inflammatory' types of supplements, along with my whole food /green food types of supplements which help nutrition. I'm beginning to believe (through my own experience) that immune system response can be corrected and that would also help control any harmful bacteria within us.

Take care,
James.

hi collin,

i am also hla-b27 negative and the last rheumy could find no proof or evidence of arthritis either. but the physiatrists and orthos all felt i had an arthritis and so are the ones who sent me there. do i have AS? arthritis? an autoimmune disease? don't know right now. maybe i do, maybe i don't.

i'll tell you, when i first read about spondyloarthropathy, i really felt i had found "it", the explanation to all my mysterious tendon and SI problems. i came here and was even more convinced. and i certainly haven't ruled it out....

but, playing devil's advocate, "what if its not AS, or even a spondy, or even an arthritis, or even autoimmune?" if i insist it is, then i miss the opportunity to dig deeper, so i turned to asking, "well, what else could it be?" i've pleaded with the doctors that have told me its not X and has turned me away, "please give me some other ideas of what then could be causing this, please." but unfortunately for now, i have not found a doctor that can do this / will do this. with the doctors being so strapped for time, it may be simply that they don't have the time or energy to think about complex cases. so doing a differential diagnosis is just beyond what can be done these days. but i also know there are other doctors out there who do think like this. who are well aware of diseases that mimic others.

so i am still on my "what else could it be" quest and seeing an endocrinologist. he ordered a bunch of blood work and i see him tomorrow to see what he says. from the bloodwork, i do not have diabetes but am prediabetic. i do not have an obvious thyroid problem but some of my numbers are borderline. could any of this be causing my problems?

for those of us in "diagnosis mystery world", i think it is best to explore all avenues. i haven't forgotten about the spondy and am scheduled to see another rheumatologist that comes highly recommended. and in the meantime i am exploring the endocrine path as well. if doctors haven't been able to figure it out in 10 years, then i know its not a simple diagnosis, and i know i can't figure it out myself and need the help of doctors willing to help me. we may not know what we have, but we know its something and isn't normal. there has to be an explanation.

so keep digging, explore all avenues, and as you suggest, do all you can do to control the symptoms. i wouldn't have been functional for 10 years if i didn't work very hard (on my own and with doctors and PTs) to get the symptoms under control. i think the best way to control symptoms is to figure out what is wrong and treat that. but a way that does work to an extent is to find out what helps and just do it, as you suggest.

all of us in "undiagnosed land" will get it figured out, just later rather than sooner for some.

sorry to hear about your frustrations,

sue