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#410147 - 08/28/10 03:40 PM Today
joannesford Offline

Registered: 08/06/10
Posts: 446
Today I have been looking into how i might get a referal to one or more of the doctors that deal with AS and the diet. Not too much progress, and could even take months, ut I have faith

I am still debating what to do about the Rhumatologist I have right now. As grovelly as this sounds i do not want to leave her on bad terms because this all gets sent back to my GP and i need to keep as many folk as I can on my side

Anyway, I have the weekend to think about this

The other thing I am considering is going for my own genetic test

On the Internet they are charging between 350 to 400. and thats just for the genetic test, if i end up having to pay for the other tests too, we could be looking at 1000 here

Anyway, I phoned the labs and I asked them, how much do you charge doctors for the test, and they said 120. Bargain!!!!

Anyway, they said they cannot do it for me direct but if I find anybody qualified who will request it for me that should be fine

I do know a few alternative therapists so I will ask around

Honestly, isn't it great. In England we have a NHS, and it is supposed to be free health care for everybody. But in 20 years I have never been tested for anything, no X-rays, no MRI, i don't even think they have done a blood test for arthritis in any form because they told me I had Fibro and that Fibro is not arthritis

Up until two weeks ago I have never even read one book on arthritis, because the doctors have always said to me, you are so lucky, at least you do not have arthritis

they also told me that my illness was not progressing and could not.

Now they have found the sacriolic problem and the leg discrepancy, the knock knees etc, they are telling me I am reading books and diagnosing myself.

When folk say stuff like this to me self doubt does set in. I have really had to talk to myself about this today.

I reminded myself of all the times when i used to say to my husband, and even a few doctors, every time i eat carbohydrate it is doing my back in there, and I would point to the sacrioliac joint. I would also say, I think there is something living in my gut that likes carbs. and I would say, it feels like something is waiting to get fed and then once it has had its fill it then goes on the rampage through my body. And many times I would say, do you think it is my immune system attacking something in my back?

Anyway, it is clear i am not going to convince this Rhumatologist, so I will soldier on. But i am not in despair

When I finally get a diagnosis I am not going to be taking there medication, not right now anyway, with my ketosis I do not need it. But i do want a proper diagnosis

Once i know for certian I have AS I can stop searching. I can stop reading up on everything and thinking, do i have that, could it be that and I can focus on treating this illness

And when that time comes I am going to be treating it with the NSD, so I am lucky really because at least i know about this. What about all the poor folk that do not know about this?

We really should be proud, and we should have a humble confidence about all this. We can help ourselves, and we can save other people too

Love Joanne

Edited by joannesford (08/28/10 09:16 PM)
My name is Joanne and I am about to go for tests for AS. Any advice would be much appreciated

#410160 - 08/28/10 08:26 PM Re: Today [Re: joannesford]
debmc Offline

Registered: 07/30/10
Posts: 73
Loc: AZ, USA

I'd like to know where these docs get off putting patients down for educating themselves on health, disease and medical issues. Are they docs or education police????

You know, there are some Lysosomal Storage Disorders (LSD)that have features that closely resemble AS and other enteropathic arthropathies, or in which such symptoms (sclerosis, fusing, nerve compression, DSD, parasthesis, myopathy) develop as a complication of being left untreated.

My family and I are in process of being worked up for LSD. We go for the first blood draws Monday, then will be seeing geneticist #3 on Friday for further evaluation and possibly more testing. My consult w/the new rheumy, to be evaluated for AS, isn't for another month.

Hang in there, Joanne! If there's one thing I've learned, it's to listen to your body. If your symptoms resolve or improve from dietary change or supplementation, there's a reason.

Most conventional docs dismiss anything they don't readily know or understand. And, IME, very few know much about the nutritional side of medicine or care to investigate underlying cause, as they are taught in med school to wear blinders and treat with drugs....mask the symptoms and hopefully the complaint goes away.

Deb Mc

#410163 - 08/28/10 09:42 PM Re: Today [Re: debmc]
joannesford Offline

Registered: 08/06/10
Posts: 446
It is hard work Debs, but what can we do? We have to look after ourselves

I have really really really had to talk to myself, because when ever stuff like this happens I usually get all angry, start having nasty thoughts, and then feel guilty and don't return LOL

Anyway, I am trying to hold it all in perspective. It is almost time for me to be discharged from my Physio so i am going to ask her if she can sort an X-ray of my sacriolic joint out, and possibly my neck too. At least if I have this done it is something to ponder on. which reminds me I have a question about this, but i will save that for another post

I could ask for a blood test, but I am reluctant to do that right now because I am eating low starch. If it comes back low, then I am basically proving them right, or at least thats how they will see it

I am going to keep working on getting one of these other doctors. I have a few leads and eventually i should find somebody that at least accept that the diet can clear up some symptoms

I am debating whether or not to challenge her on her assumptions that my husbands illness induced my illness or whether or not i should leave it. She did a study at University and showed that Fibro patients were invariably carers, so with this preconsived idea she is judging me. What she does not know is that I have only known my husband for 10 years, and he has only een sick for five. I have had this illness for 20 years. In fact in my heart, I believe it was coping with my illness that gave my husand the brain heamorhage, ut that in itself is aother story

Also she was pushing to get me to see a shrink. I told her I was not iterested in that, that all I wanted was tests for Alkylosing Spondylitis, but she very assertively said, you do not have Ankylosing Spondylitis, if you did have I would have sent you for tests, you have a condition called fibromyalgia. fibromyalgia is triggered by stressful situations

Anyway, I am not even bothered if it is Fibro, and I am not even bothered if it is caused by stress, I can find my own shrink thanks LOL. But I was not there to be analysed I wanted to be tested for Ankylosing spondylitis

Anyway, I do not know if I should write to her explaining fully my position or whether to just pull out. I think if I write it will probably e a waste of time, but if I leave it here at this point she may write junk to my GP, and then i don't want it carrying on there

Maybe I am worrying too much. I am thinking that I should try to get my head off all that and focus on the leads I have.

Oh Lordy Lordy............................ the trials of life LOL

Thanks for the support Deb

Love Joanne

Edited by joannesford (08/28/10 09:42 PM)
My name is Joanne and I am about to go for tests for AS. Any advice would be much appreciated

#410167 - 08/28/10 10:49 PM Re: Today [Re: joannesford]
debmc Offline

Registered: 07/30/10
Posts: 73
Loc: AZ, USA
I would probably just look for another rheumy even if it meant another wait. From what you write, it doesn't sound like she'd be open to reconsideration.

What type of blood test are you wanting done? If it's the HLA B27, it shouldn't matter if you are on or off starch.

#410170 - 08/28/10 11:40 PM Re: Today [Re: debmc]
joannesford Offline

Registered: 08/06/10
Posts: 446
Yes, it is the HLA B27 I am considering paying for. I realise with this one the starch makes no difference.

to be honest I want the results for myself. A kind of evidence to myself, because if that one comes back positive I know i have it. There will be no doubt in my mind.

To be honest I do not really dout it now. Each time I let myself think I do not have it, my mind pulls back and says, but you know you have. But there is that thing, you kow the sort, ut what if you are wrong thing LOL

Oh, I know this is crazy thinking, but I keep having flashes i my mind, of the results retrunig and not one of them standig up, and my Rhumatologist sniggering, saying I told you so .....

Isn't it sad that they get me this paranoid. I know when I was younger that by now I would have pulled out, thinking that if I failed the test the embarrasment would e too overwhelming

ut then I think, for goodness sake woman, we are talking about your life here. Get some backbone, and go in and tell them you ain't puttig up with no more of this neglect and abuse.........

Gosh, you know, I just do not know how timid folk get through this life. I am quit tough, but when it comes to doctors I always end up with a dizzy wizzy head

I don't know, may the lord give me strength, Amen

love Joanne
My name is Joanne and I am about to go for tests for AS. Any advice would be much appreciated

#410184 - 08/29/10 04:33 AM Re: Today [Re: joannesford]
JamesB Offline

Registered: 07/17/03
Posts: 2954
Loc: Northwest Ohio
Hi Joanne,
It sounds like your current doctor doesn't have an open enough mind. We shouldn't have to use much effort to convince our doctors that we noticed that we don't feel good after we eat something. What's not to believe? Your doctor should have at least had some blood tests done at some point to rule out other conditions. Try to ignore that comment about you reading books and making diagnosis-es. At least you were working with your doctor. I'm sure there are many doctors out there that still appreciate that their patients do a little research for themselves. Good luck on the referrals and or tests.

Edited by JamesB (08/29/10 05:16 AM)

#410186 - 08/29/10 04:42 AM Re: Today [Re: JamesB]
joannesford Offline

Registered: 08/06/10
Posts: 446
Hi James

I must admit i am up and down with this. I myself cannot figure out what is going on. sometimes i think there is something written on my records. At other times i think it is because i do not take anybody with me, but i do not really have anybody that could come

Anyway, it will all sort itself out, and at least I know about this diet. I feel like whining on about the 15 years that i did not know, and the last five where i have been working it all out on my own but , I know now that i must not take no for an answer

I am ot approacing any of the crew i am currently involved with for a few days whilst i consider how i want to leave this sorry mess. I do not want the fall out dfrom this following me to my next Rhumatologist.

Also, as each day passes I am becoming increasingly confident in my understanding of the illness and the diet. the more i feel confident aout this the more I will be able to express myself without getting in a muddle

They told me I definately did not have Arthritis and this is why i never read up on it...............Oh I am not even gong to go there because it will just set me off

With the knowledge I have now there is no way i am going to shrink back into a fluffy ball. It is hard ecause i have had so much hassle with them over the years but some how I have got to over come this

I have had hard things like this that i had to do in the past and I did do them. so i will not shrink, I will not, ut I honestly cannot believe just how crazy this ordeal gets sometimes

at least i kow aout the diet. Praise God. I can tell you now with out the pain relief I get from this diet I would not be able to do this

Love Joanne

Edited by joannesford (08/29/10 04:44 AM)
My name is Joanne and I am about to go for tests for AS. Any advice would be much appreciated

#410296 - 08/30/10 09:19 AM Re: Today [Re: joannesford]
Inanna Offline

Registered: 11/15/01
Posts: 18060
Loc: UK
Joanne, I was once told I would never get arthritis. HA!

Back in 1991/92 I went through a horrific flare. Iritis, couldn't walk upon standing, at the chiro 5 days a week for lower back pain, a rib that kept popping out and my neck (specifically the Occiput), you name it. Because the Iritis was recurring on a fairly regular basis, I had 3 or 4 sets of blood work done, because the ophthie knew that Iritis rarely occurs without an underlying cause. I am RF negative. Hence, I was never going to get arthritis.

Oddly, my psychiatrist at the time (whose husband is a rheumy) told me that she felt I had a sero-negative form of arthritis, just by the way I was moving. I didn't believe her or listen to her because the blood tests had already proved I would never get arthritis (and I didn't know what 'sero-negative' meant).

So, long story short, if they are basing this assertion that you definitely do not have arthritis because you are RF negative, you may have a sero-negative form of arthritis (such as AS).

Also, you might be interested to know that The Arthritis Society of Canada includes both fibro and polymyalgia on their list of arthritic diseases, as does Arthritis Research UK. Just so you know. smile


A life lived in fear is a life half lived.
"Strictly Ballroom"

#410307 - 08/30/10 10:44 AM Re: Today [Re: Inanna]
joannesford Offline

Registered: 08/06/10
Posts: 446
Hi Inanna

This probably will not surprise you but i do belong to another forum for Fibromyalgia. I have been there a long time and consider the folk there some of my best friends. I chat with them daily.

Over the last two weeks I have been talking to them more specifically about my symptoms, and as I shared I could see that I do indeed have several symptoms that could be classified as either Fibro or AS. However, not one person there has said they have a problem with thier sacrioliac joint, and definately they have all said that they do not feel flares rising up from there, and most have said that they do not get flares that intensify all their symptoms at once

Let me explain this a bit better

I have pain in all my joints and i do have what feels like nerve ending pai around my body. what i mean by nerve ending pain is I do not have a joint in my scull ut in a flare all the top op my head would hurt too. (I do not know if that would be an AS symptom or not)

But anyway, I have pains in all my joints and I have what i would call a sesitive stomach and a sensitive bowel. And at all times I have a awareness of my Sacrioliac joint

these things are with me, even today on a NSD day where my symptoms can be described as 1 out of 10

But if I ate starch this situation would change. If i ate a little starch, my bowel would feel tender, and make itself more noticable to me and my sacriiolic joint would feel slightly inflammed, all my joints would hurt to a point that i would notice

If I continued to eat the starch my sacrioliac joint would pulsate and in the end it would feel like i had an explosion there. Immediately my IBS would be triggered and this crazy energy thing would rise run down my legs up my spine, through my head, to the ack of my right eye, and down my arms. This sensation could go on for hours or even days and I would feel disorientated and would want to escape from oise, smells light and other people. All the way through this my bowel would feel like it was twisting and all my joints would be in agony.

at the end when it stopped i would be lift with what would feel like a battered sacriolic and very tender joints. For several days i would struggle walking and lifting etc

This might then die down to amangable level but if I ate starch again, for certain this would happen again

I asked my friends on the Fibro site does anything like this happen to you, they all said no

Over all they said their symptoms change from week to week and the pain moves about. They also said they do not have times when all their symptoms suddenly all become worse together. And, because they are low caring like me, they said they did not think starch specifically triggers their symptoms in the way i describe, namely not specifically one or two hours after the meal. And they did not identify with this thing that i said about it eing the sacriolic joint that triggers the IBS and visa versa

Perhaps reading this, some of you might say these are not specific to AS. Please do tell me if this is so because even if I am wrong about my assumption that this is AS I would rather know.

Thank you all for sharing these things with me, you are helping me so much on my journey

Love Joanne
My name is Joanne and I am about to go for tests for AS. Any advice would be much appreciated

#410318 - 08/30/10 12:12 PM Re: Today [Re: joannesford]
Dow Offline

Registered: 03/11/08
Posts: 3231
Loc: Valley Cottage, NY
Hi Joanne

Have you read up on the whole klebsiella theory yet?

That klebsiella thingamawhatsies (I think they are bacteria) live in our digestive system, and they eat (break down) the starch. When there is a lot of starch to be eaten, the klebsiella grow in numbers, and when they reach a threshold amount, THAT is when some people with an auto-immune disorder get the inflammation, the pain, or other miserable responses, as the body confuses the klebsiella as an enemy invader, and sends green plastic army men with sharp little bayonets to defend against them.

It's what the green army men do that is the problem!

That's why avoiding starch, fasting, or drugs that alter the immune response are helpful to some, they all interrupt one part or another of that process

Did I explain that right? I'm sure someone will be correcting me any second now, and including the link to the actual klebsiella theory


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