Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Is it always arthritis ?

Thanks for the welcome, Michelle.

I am being worked up by a geneticist for the genetic disorders. Lots of other symptoms involved that go beyond AS. I've already been Dx'd w/three genetic disorders and hypophosatemia is a known complication of two of them. We're thinking x-linked or genetic, as opposed to acquired, as my sons also have it, and we all presented in infancy with the same symptoms.

The geneticist and a team of specialists are continuing to tease through our medical records, and will be prescribing more biochemical testing beginning with a chromosome microarray on my older son since he's the most severely affected. That and other testing is how they will confirm or rule out the suspected metabolic disorders.

What gets so confusing is, I have Ehlers-Danlos plus two inborn errors of carb metabolism but none of these would explain my muscle problems and skeletal changes, nor my other food intolerances. So there's more to it. For the past year, all I've been able to eat is 3 things, period. Slightest indiscretion and I turn back into a giant contracture w/living rigamorits. My orthopedic doc referred me on for AS evaluation because of my history, the skeletal changes and the insidious onset.

I'm hoping like heck I don't have an enteropathic arthropathy on top of everything else. But given my symptoms and the strong family history of auto-immune disease, I realize it is a possibility. The rheumy I'm waiting to get into to see is the only one here locally that my ortho would refer me to. So I feel pretty confident that this rheumy knows his stuff and can sort through everything, coordinate w/the not-local geneticist and do a thorough and appropriate evaluation.

All in all, I think I'd make a good example of the importance of getting a timely and definitive Dx.

Again, thanks for the welcome.

Deb Mc

There is a lot here to digest but I feel this is very much what I need. I need some kind of coherant understanding in my mind so that when the doctors tell me tests are not worth having or certain symptoms do ot mean what I think they mean and so on at least I can give some explaination, even if it is just to myself why I am thinking what I am thinking

A few weeks ago I beleived I had no family history of AS, but now that I have actually asked my family what they think, masses of evidence has come my way. Granted some of this may not be relible, but there now is so much evidence I am finding it hard to ignore it

I know it is going to work against me if I keep expressing how not eating starch is helping me, but without this information I do find it hard to explain why I suspect I have AS. As I learn more about the illness and the correct terminology slowly I am getting away fromt the diet and verbalising my symptoms in a different way. I do not yet feel confident speaking in this way but I am getting a little better

I have just more or less mentioned this, but learning the terminology is helping me get away from Fibromyalgia language. Fibromyalgia language is very psychological and when i use that language to explain my AS symptoms I myself sound like i am implying this condition is psychological. Arthritis medical terminology make my illness sound more like what it is, a physical illness

The other reason why i need to know about tests and diagnosis is that if things do not get moving soon I am going to be buying these tests myself. The lab that does the tests has told me the paper work can be complicatied and that the results are often open to interpretation so if I go ahead with all this myself I am going to have to have some understanding

And i have to ask about diagnosis and results particularly in relation to my diet, because my understanding is that this diet can reduce inflamation by over 90%. If this is true then when i go for tests it is likely my results will be significantly lower than they would be if I was eating starch. I do not want to eat starch and would prefer to be able to be straight with my Rhumatologist about this. Right now I cannnot explain any of this to my current Rhumatologist so tomorrow when i go I am simply going to be asking her why i cannot have a scan or x-ray. but in truth i want to know a lot of other things, and I want a Rhumatologist that understands the diet. We will see in time if I can find this, but the information you are all giving me is giving me more understanding of what understanding I should expect my Rhumatologist to have

Thanks ever so much everybody, I know it takes time, and often some checking and thinking to be able to pass this information on to me

Kind Regards

Joanne

I wish you the very best tomorrow, Joanne. Please let us know how it goes. I'll be thinking of you and sending lots of positive thoughts your way.

Deb Mc

Joanne, I hope you get what you need at the appointment. Sad to say, you may have to downplay the role of diet in your overall well-being just to be taken seriously. There are simply not enough doctors out there who have an open mind with regard to it.

Stick to the family history and your own symptoms, and insist on the proper scans/x-rays to get you diagnosed. Also, take in a copy of the new ASAS Handbook, with the new international diagnostic criteria (I think they're on page 4). They are not as heavily skewed toward elevated ESR and x-rays as the old criteria.

Once you have a firm diagnosis and doctor on your side, then start discussing the role of dietary changes as part of your treatment plan. Unless you have a rheumy who whole-heartedly espouses the idea of the no/low starch diet, this really is the way to go. Doctors seem not to like it when we do our own research and insist they abide by what we have found, rather than by what their schooling/experience tells them. I've found that if I present things in a balanced way, with evidence from my own experience to back them up, my doctors are much more willing to entertain the alternative treatments I want to try.

Just a few thoughts. I hope the appointment goes well.

Hugs,

Hi Deb

I still do not know what I am going to say tomorrow. I know that my objectives and my Rhumatologists objectives are very different. I want physical tests. I want some evidence so I can if I need to go beck to my GP and show him why I suspect I have AS or some other kind of Reactive Arthritis. If I do not get this the report that will be going back to my GP will be much the same as all the other reports that have gone back to her. Basically that I have Fibromyalgia and that I have been offered medication and not accepted it and that I have been offered Psychological help and not accepted it. They may even write saying that these ideas I have about AS and my concerens about starch eating are unfounded. This is of course the worse case senario, but if I do not at the very minimum get an x-ray out of this it is going to be hard for me to prove to my GP that there are grounds for me to take this further

I have prayed today, and I have asked God to give me the words. I have asked hom to give me the correct temprement and tone. I have asked Him to give me the self belief I need to see this through and that the whole time that I am there not let me forget He is with me.

I have been on my feet all day today, and I have been lifting too. My knee joints and pelvic area are feeling painful and weak. Normally this would ger me down but today I think it is a good thing. It has reminded me that I am not as recovered as much as I often feel I am.

When I am feeling well it is easy to start believing I will continue to feel well, which I know is a good attitude, but the reality is, this illness has peaks and troughs.

I have a responsibility not just to myself but to my husband and children to seek wellness at the highest level achievable and accepting just I feel OK now is not good enough

I need to know how much damage has occured to my sacriolic joint, my lower back, my knees, and something I do not mention, my neck, because when these play up my neck also plays up, and this is much more often than my other joints

If at the end of the meeting my Rhumatologist can only offer me psychological help I have to find the confidence to ask me her to put it in writing why I cannot get any tests done. this is always the sticky wicket with me, because once I have asked this they will be aware of my intentions to take this further and I fear so much they will conspire to may me look like a neurotic fool. But again, even with this, I am projecting and expecting the worse. This has all gone on in the past but it does not mean it will happen now and I have to keep reminding myself of that

The other thing I have to kepp reminding myself of, even if I get no tests, I am still no worse off. I am already doing all I can to help myself, following the diet, excercising and visiting the Physio regularly. I may take time for me to find a new Rhumatologist and/or sort the tests out for myself but within a year some progress will have to have been made with this. And even with the results my intention is to just keep doing what I am doing and this really is where my focus should be

It is very heart rendering to here your story and I keep saying to myself I know what she is going through, but really I do not think I have any idea. I just think it is so lovely how despite all the troubles you are facing you can still find the time and sincerity to wish me well.

God bless

Joanne

Hi Inanna

The trials of life LOL

Oh i have been so emotional this week, but I know I have to try to have a more positive perspective. The memories that I have are from a different era in my life. I was much younger and I havd young children then and I did not know about the diet then and that is why I was so ill and weak and unable to fight what was happeing to me

Now that I am following the diet more strictly my pain is far far less and my chances of a flare are far less so I don't need to be worrying about these things I am older and I am physically stronger and I am mentally stronger too.

I have told myself over and over today to stop seeing these people as the enemy that is out to finish me off, instead I am trying to visualise them as reasonable and just misinformed

When I go tomorrow I am going to do what the lady at Arthritis UK said do and tell them I am unhappy and I do not feel like I am being listened to

then when they let me speak I am going to say what you are saying that these physical symptoms worry me and that because there is a family history of AS I would like some tests done

They told me at the Arthritis UK to keep very focused on what I want and to keep repeating it is a calm but assertive manner

They even said that if I go to see the psychologist I should take my evdience there and speak only of what I want. And not get drawn into any converstions about my family, my past, etc

I am not used to behaving in this manner but I do think as I learn more and accept more that I am able to do this. And that often it is not the big deal my heart and mind make it into

It is a big deal, I am talking about a serious illness I know, but it is not such a big deal that I should let myself get poorly because of it.

I have faced just a large troubles before and come through them so why might I not come through this one well? There is even a possibility that since my last visit my Rhumatologist has already reconsidered her ground

Anyway, it is not long to go and knowing folk are supporting me really is helping me with my morale.

So thanks so much for responding to my post Inanna

all my love Joanne

Joanne - If nothing else, tell her you need the x-rays for peace of mind. That given your family history and your own physical symptoms, you want to make sure there is no degenerative or other changes going on with your SIJs or spine.

Here's the approach I used to get my son's first liver biopy done. Son's ultrasound showed his liver was "diffusely echogenic", indicating inflammation. Darn "leeever" doc kept telling me he didn't see a connection between this and that and that my son's liver was just fine. After another heated round of argument, I looked the doc square in the eyes and asked, "Okay, can you guarantee that it's not inflammation?" With that, he wrote up the Rx for the biopsy.

Fast forward 2 months post-liver biospy at our follow up appointment. Instead of the "leever" doc, his PA reported the findings. And guess what? My son has unexplained chronic hepatitis with iron deposition in the kepfner cells. I imagine those findings had something to do with why the PA delivered the news. The "leeeever" doc wished to avoid eating crow. Further testing showed the hepatitis to be non-viral and due to some "unknown" metabolic process going on in there that shouldn't be.

Anyway, ever since then, if a doc is resistant, I use "for peace of mind" as the compromise in getting testing done as and when needed. The doc doesn't have to acknowledge there may be something wrong, only that he's giving a concerned patient/patient's advocate needed "peace of mind". And on paper that makes the doc look good, especially if the results shed light on a dark area and exposes an abnormality or problem, and with us it usually does.

You can do it, Joanne! You can smooth talk the rheumy into Rxing the x-rays you need. And then she'll be the hero for making the discovery. And you'll have your documentation. Win, win! Go, girl, go!

Deb Mc

You see Deb this is why it is better I share my concerns with you all. I carry a lot of baggage regarding this illness and although it is justified I have to get rid of it if I am going to have any success

there is a massive shame issue I carry with me, I feel very ashamed that i am ill and ashamed that I allowed all the abuse that went on i the past.

I also feel angry. I am angry with all the other docotors that have missed this and written things down about me that influence the current doctors thinking

I am also angry with myself because I do not stick up for myself and I blame myself for aome of the misdiagnosis because I went along with all this psychology stuff in the past

I also have too much fear. I am far too afraid of these people. They do have some power in my life but not as much power as my heart and mind keep telling me. there are other paths and I will find the path I need to be on

This week my head has been all over the place and I have had so many strong feelings and these have been clouding my judgement making be touchy and and self defeating. This is no good. If I want to succeed with all this I need to find my calmer more logical self. And I have doen, but only because I have been sharing here with you lot

Thank you Deb for this advice because already I now have some peace of mid. I now know I can go there tomorrow and make a success of it

I may have to do all this one step at a time but one step is better tha no step. And a lot of one steps will all add up

I am so glad I have returned to this site tonight because this last piece of the jigsaw is really going to make a massive difference tomorrow and I will sleep more peacefully tonight

You are a very loving person Deb

Love Joanne

Hi Joanne,

I, too, have been following your posts and trying to keep up with the details you've shared, although I haven't had as much time lately for reading and chiming in as I'd like to.

I see so many good and thoughtful responses to your question, which I am sure must be helpful while you try to sort out your own thoughts and prepare for your upcoming rheumy appt.

From my own point of view (unless I have missed a few posts), it doesn't sound to me like you have had much in the way of testing yet that could help to rule out AS as a possible cause of your symptoms. The stats do suggest that AS would be a very unlikely cause. However, unless your rheumatologist has already performed at least some simple 'range of motion' tests, (asking you to bend and try to touch your toes, measuring your chest expansion, etc.) and has examined your joints, then I'm not sure how they could dismiss your complaints or reach the conclusion of Fibro, without doing so.

Like anyone else, if SI joint pain is your chief #1 complaint, and the pain has been continuing on, unresolved for years, you deserve to have this possibility investigated. In the absence of having had a HLA B27 test, and without SI joint xray, or clinical exam, then it is anybody's guess whether this is a possibility. If your doctor did do a good physical exam but didn't feel that further tests were warranted because your range of motion was good, then it may be tricky to talk them into further testing, I fear.

If your chief complaint is SI joint pain above all other symptoms, then keep focused on that. Communication can be a tricky thing, and I agree that putting too much emphasis on your pain seeming connected to what you eat may only serve to confuse the issue. I would mention it more as an add-on rather than the focus, but that's just me.

Take some nice deep breaths and know that we are all wishing you the best at this appt. Remember that most docs really do want to help.

Hugs for luck!
mig

You mentioned that your were afraid of being labeled a non compliant patient for not accepting a medication or for not seeing a psychologist. If the Rheumy suggests a medication, take the script with you, say thank you so he does not tell your GP that you are not cooperating. Go through all the hoops they want your to do. It may be you have to do what they want for a while until they come around to doing what you do want.
Donna