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Joined: Apr 2012
Posts: 8
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Geo Offline OP
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Joined: Apr 2012
Posts: 8
Well firstly I would like to say hello and I am glad to have found you all smile

I have been suffering with severe pain in my lower back and right hip for a few years now and it has been going through phases the last 6 months where I get a few days to a week when the pain is more bearable - then it comes back with a vengeance! Today is a real bad day!

Anyway, another part of my problem is night sweats - this has been on and off for the last year, largely every night leading up to a major flare up in the pain.....

I have had every blood test under the sun and to all intensive purposes I am a pillar of health! Nice to know I don't have AIDS etc......I also don't have hla-b27

Now that's the thing - my consultant is not happy to diagnose AS because I don't have the gene and my x-rays don't show "bamboo spine" and wants to leave me with no diagnosis......as he thinks it is better for me????

I have at least forced him to agree to an MRI - but this will be a while away and I am left with nothing but co-codamol to help with the pain......and even if I took 100 of the things it won't even touch the pain i am in!

My GP won't do anything to help as I am being dealt with by the consultant - so I am at his mercy and won't be seeing him for a month or so......

Whilst I appreciate that none of you could diagnose me - do my symptoms tie with AS?

Thanks for looking and any words of wisdom you may impart!

I just wish I could know what is wrong with me as I am left with the idea it is all in my head - yet the pain is unbearable!

I'm 32 - it takes me an hour to get up and out of bed in the morning after very broken sleep.......things get a little better after the days activities only for the stiffness and pain cycle to start all over again.

Am I going mad? Well I know that melancholia and depression is slowly forming a cloud over me!

Wishing you all even a few minutes of non suffering!

Geo.

Joined: Jan 2008
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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hi geo,

it sounds familiar, that's for sure.

the most important thing, i think, is that you get treatments that make you feel better.

i've been labeled with undiff spondy (most likely). but the important thing is that my rheumy is making me feel better between flares, and working hard to help me get a handle on the flares too.

you can see the list of things i'm on / doing below my name. its taken many years and many doctors to get to this point. it can be a bumpy road, but the knowledge here makes the process go a bit faster and makes the road a little less bumpy.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Apr 2012
Posts: 8
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Geo Offline OP
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Joined: Apr 2012
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Thanks Sue!

This site is a wealth of information and I am slowly getting through it smile

I suppose I need to keep pestering my consultant to hand me over to a rhumatologist if he is reluctant to diagnose - a pain specialist at least would help so I can get something other than over the counter drugs for the relentless pain......otherwise I will be forced to go down the route of the old wacky backy as that is easier to get hold of than tramadol and the likes smile

Will definately be looking at my diet to see if this has any connection with my flare ups.....

All the best,

Geo.

Joined: Jan 2004
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Hi Geo - Welcome to the KA family. Unfortunately there is much confusion in medical circles about DDx of AS - can take 10 years and more to get a diagnosis, and longer in some instances. Sadly your doctor is way out of date, but that is commonplace. ASAS/EULAR are working on the educational aspects.

Go to the 'Highlights in Spondylitis Research' forum. Check out all the information there - will take a while to ingest and longer to digest...don't get brain ache. Here's a couple of papers you'll find on pp5 :

https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=452972#Post452972
HLA-B27 Positive AS Patients Pesent Differently to B27 Neg

https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=453306#Post453306
Gender, HLA B27 - MRI Predictions - Pos v Neg

http://www.asas-group.org/education/ASAS-handbook.pdf
ASAS/EULAR Handbook
(This handbook should be the bible for every rehumatologist and every GP should be aware of it and have a copy for ready reference. And, every AS patient needs to have the info at their fingertips)

https://www.kickas.org/ubbthreads/ubbthreads.php
Here are the 2010 Updates to the Handbook

B27-negative, this test is of limited value under ... Diagnosis of ankylosing spondylitis and related diseases / M.A. Khan ... HLA-B27 test as an aid to diagnosis ...
www.clinexprheumatol.org/article.asp?a=1453 -

---------------#

I could go on digging through this stuff for you, so, far better for you to go to that forum here and slowly sift through. Any questions, we are all here to help - and yes, there are several very knowledgable persons and scientists here on the boards - and everyone is very very supportive.

Then, go to the diet forum. Check out what the no starch diet, and low starch diet have to offer. Then take a look at the medications, drugs section, followed by alternatives.

After that lot you'll need to come up for air <LOL>

AS sure is a vile disease, but it aint a death sentence. Just can be hellish to deal with. Seems to hit the male worse than the female, and to hit harder still IF positive as a carrier of that pesky HLA-B27 gene! (I am negative for the gene, and female).

Now others will be piling in soon enough. So, grab yourself a nice hot drink, relax and start the 'positive education in AS' - take it in steady sips of information though... alien

Go well - take care -

Molly C (France)
Keeping on Keeping on (nowt else to do mate!)


MollyC1i - Riding OutAS
Joined: Jan 2004
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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One more thing. MRIs. Plain ole MRI won't do. Got to be MRI Saggital Stir tau1 and tau2 and then a scan with fat supression. These are all different MRI scans. Had the works x2 in the UK but over here in France they totally left out tau-2, did no fat supression, did have one on saggital STIR.

Diff to try an tell someone to go suck eggs, but try and get the rheumy to direct correctly for the MRI scans!

Go well -


MollyC1i - Riding OutAS
Joined: Sep 2001
Posts: 6,151
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AS Czar
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WELCOME, Geo:

Certainly, You have many of the symptoms of Early AS despite the lack of antigenic evidence;

Quote:
.I also don't have hla-b27


Too often, the serological tests produce false negatives, but there are also other MHCs that can make us susceptible to AS.

Also, blood tests should include ESR and CRP for potential inflammation, especially during active times.

AS is highly cyclic, usually asymmetrical, and associated with severe morning stiffness in the early stages. Patients
often claim they must "roll out of bed."

Nuclear bone scans are much better at imaging the inflammation than mris and X-rays might only show damage after many years.

Good thing You are here; a physician unable to diagnose this disease properly will only make it worse when trying to treat it. Find one who can tell You how to prevent the permanent damage, starting with SIJ fusion.

HEALTH,
John

Joined: Nov 2011
Posts: 256
Third_Degree_AS_Kicker
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Third_Degree_AS_Kicker
Joined: Nov 2011
Posts: 256
Welcome Geo. I'm positive for the gene and female. Also with a long nasty history of iritis, and had a horrible time getting diagnosed. Even with a few specialists close by that no one thought to refer me to. It is what it is. Your pains certainly sound familiar to me. My advice, including everything those above have recommended, would be to research and find a rheumatologist who listens to their patients and understands AS. This thing is easier to navigate when you have folks on your side.

Nothing is 'in your head'. We see your pain. Hope you find some much needed relief here.


Iritis first diagnosed in 1991, presently recurrent and steroid resistant.
Tested HLA B27 positive in 1996.
AS diagnosed October of 2011.

Putting most of my eggs in the NSD and exercise basket, using only TENS, massage, heat and ice, and NSAIDS (sparingly) for pain. Drops for iritis as flare necessitates. Looking back I feel I would have been diagnosed with AS years ago, if I had found a rheumy earlier than 2011.
Joined: Jul 2010
Posts: 1,190
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Steel_AS_Kicker
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Joined: Jul 2010
Posts: 1,190
Welcome Geo, Sounds like AS to me,but I'm not a dr.What is your pain level? What joints are affected? Is it your back and your other joints too?

When those of you that have AS say you have to rollout of bed is it becasue you are so stiff you cannot bend your back to get out of bed?

I have RA and cannot go down the stairs in the morning very well, and I must have at least 2 showers a day to loosen things up. I have never had to rollout of bed and Iwas wondering what it is like . Is it stiffness and pain to move the back? I know I can't use my right wrist in the morning to turn the shower faucet on, so I am figuring it is something like my wrist, you just don't want to use it or move it.
I have horrible low back pain and it is hot to touch,but I have never had any trouble getting out of bed. I'm just trying to understand AS better. My wrist and knee are swollen right now-- not both just one of each plus one swollen elbow. I thought RA was suppose to be symetrical.


Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

excess fat/oils = pain for me
recipes for raw food on Youtube "raw food romance"
and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
Joined: Jan 2008
Posts: 21,346
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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to answer your question:

for me, when that is the case, its due to the muscle spasms.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Jan 2004
Posts: 9,845
Likes: 4
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2004
Posts: 9,845
Likes: 4
Rolling out of bed? Ho-Hum, horrible. The pain is just overwhelming. One can't turn over, one is *stuck. I used to literally roll out, then trying to stand was hell, but worst of all was dressing...Oh-Oh. Nasty. My physio gave metips, roll back onto the bed, then roll back, so NO weight of body on legs and put on underwear, tights, trousers rolled back on the bed. Phew. Used to take forever, and the pain. After about two hours of struggling could 'begin' to move around some.

I was running my own business then and my super duper secretary could open up the office and crack on with the day whilst I struggled to eventually join her - then knee gave out. Bah. AS is a stink of a disease.

All good fun in the morning, but tons better nowadays. (Though after several days of feeling 'great' today am stiffened up - but I WILL get into that garden, plants are yelling at me for attention...<VBG>

Gotta Keep on Keeping on - innit?


MollyC1i - Riding OutAS
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