Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I just had a big argument with my new GP!!!

Oh my god!!
Before an hour I went to visit my for a first time a new local GP!
After the hand shake I said i want a MRI scan on my left knee and my SI joint to find out if there is any damage according to angylosing spondylitis because x rays shows nothing.
He ask me if i ever visit a a specialist and i said nobody told me to do it all these years. He look surprised.
Anyway he told there is reason yet to do MRI and also MRI cost a lot.
I said when i was diagnosed with AS they send me for RMI and cost me nothing.
He said he will send me for blood test to detect how serious the inflammation is.
I told him about the LSD diet and there are many cases that people went back to normal and he said there is no scientific proof about this. Also i told him that i started taking small dose of apple cider vinegar and he said yes it is generally good. He said there is not also no cure for AS.
Anyway he said we will see the blood test results and probably will send me to a specialist which it will not cost a lot because the most of it will covered by insurance.
When we had this conversation it seems for a moment that i was telling him what is proper to do in this situation and there was a tension.
I told him i am not a doctor like him but i spend days and night to know much as i can for AS.
I think i like him.
I hope he like me too!
Costas

Well, if you like him that is all that is important. One good thing is that he is sending you to a specialist. I hope that goes well for you.

If i have to deal with all these doctors and specialists i will not stay quiet this time.
I will demand to prove me that everything they say or ask me to do is the right thing!
Also i must keep reading a lot of posts in this site or generally on Internet for gathering more information. I can't stop now!

Hi Costas,

It sounds like you have a good Doctor.

My doctor told me that in Australia you have to go to a specialist to get an MRI referral, otherwise it costs heaps - even with a specialist referal it cost me hundreds and hundreds of dollars to get several done (I think it was over $200 a scan, but it might have been a lot more.

So I would have hated to see how much it would have been withouth the specialist referal.

Maybe it would be better if you "suggested" to the doctor, rather than told him?

I'm currently in an insurance battle, and I have both my GP and Specialist on side, and it makes a huge difference - I would be sunk otherwise.

All the best,

James

don't be surprised if the blood work doesn't show a lot of inflammation. some with spondyloarthropathies (including AS) do have elevated CRP and ESR, others don't. both of mine have generally been between 5 and 10. i read that since the entheses where we get the majority of the inflammation are avascular structures (meaning the blood does not flow there) so the inflammation doesn't show up in the blood. plus at least with some of us, the inflammation is cyclic, and i've never had the blood work done during a bad flare. but during a mild flare, those numbers were close to 10. below 10 is considered "normal" but that depends on the doctor, i have a few doctors now who think, no, not normal, and therefore not acceptable. those numbers may not be extreme but still showing inflammation. but again, entheses avascular, so not uncommon to have lower numbers.

as for the scans, yes expensive. if not needed for a dx, or to get treated, then why do you wish to have them done? not sure doctors will do them unless its for a diagnosis or to use in some way. but do think going to a specialist is the right move.

good luck!

Costas - glad you have a GP who is being attentive, but, they sure don't like to be 'told'. Try a 'may we discuss this' and 'from my researches' etc etc. A bit sort of 'kid glove' yes? But you do have hihs attention and tht is the first big step.

Now. Blood tests. Will not necessarily show owt of anything at all. You do not have to have elevated levels, CRP an all the rest. Don't have to be HLA-B27 positive either. Many spondys will have total normal bloods and many are HLA-B27 negative.

So, what I would suggest is to check through all the spondy support association/organisation web sites. Start with the ASAS handbook. [PDF] assess spondyloarthritis to international Society ... drug registration. The ASAS handbook in front of you reads like a compendium of ASAS history. It provides a complete picture of all measurements that have ...
www.asas-group.org/pdf/ASAS-Handbook.pdf
That is pretty much a bible - and further, print off a copy for your GP, that will bring him upto date with the current thinking, approach, on/to AS, and of course it is 'peer' produced! IOW He can't argue with it 'smile'.

Next. NASS - (UK support group) National Ankylosing Spondylitis Society A comprehensive source of information, support and membership for people affected by ankylosing spondylitis including diagnosis, treatment, management and ...
www.nass.co.uk/ -


Then. SAA - Spondylitis Association of America - Ankylosing Spondylitis ... Supports education, research and treatment for ankylosing spondylitis and related diseases. Description of the disease, personal stories, online forum, ...
www.spondylitis.org/

The sites are good resources of general information and being 'National' support groups, with 'expert opinion' on board doctors tend to give credence to the information. Both NASS and SAA run forum groups, but, don't bother - KA is the best support site for AS with a bunch of very knowledgeable people - that you will find anywhere.

Now, as for the MRIs. Standar MRI is pointless. Will need Saggital STIR scans, tau1 and tau 2 fat supression - not all radiology depts run to that high a level of a scanner. A good MRI should show up the SA problems. Standard will not show. OK? As for X-Rays, basicaly onblny useful when the spine has undergone damage, and such damage can take yars to appear. AS is a slow growing beast!

First off that ASAS handbook. Become really familiar with it - with the handbook you will have a really good table for discussion with your GP.

Happy and productive reading and go well (like your spirit, just remember to temper it a tad!) Big (((HUGS)))

Molly C (France)
Keeping on Keeping on
(typoes an all I'm afraid, my eyes are soo fuzzy. Sigh.)

Thankyou Molly and Sue (sorry to but in onyour post Costa) for so much useful information.

I didn't realise that we could have normal bloodwork and MRIs, or about the cyclic nature of the inflammation - I should have realised from my flares.

James

Jmes - from my rheumatologist's report, who is on the EULAR steering committee and was involved with the ASAS Handbook:-

"Blood tests normal, no raised inflammatory markers - not unusual for patients with AS as well recognised that there can be a discordance between inflammatory markers and disease activity. BASDAI score greater than 5 indicating active disease."

As for the MRIs, only the Saggital STIR will show up the AS problems, also need lots of 'slices' - that is images. The more the better. Think it was cemc who said that in NZ they did 23 slices; think mine were 16. Anything less than 16 may miss markers.

X-Rays, as said before, only of real use after much damage has taken place, but also good for compression fractures, anything 'bony' in other words, great; but for inflammation, enthesisis, oedema in the spine, MRI S.STIR is the way to go. Will also of course show kyphosis and scholiosis. Try to avoid high resolution CT scans as exposure to rads is high - like one CT high resolution is equiveelant to 180 X-Rays (so says medical opinion). Try to avoid those.

Another useful one for inflammation is the nuclear bone scan - nasty and rad exposure but IF have inflammation will light up like a light-house!

Glad it has helped James. Go well you guys - take care -

(Typoes an all I'm afraid)

Hi Sue
Thanks for the information about the CRP and ESR tests.
Somewhere i read that the MRI shows the damages around the joints.
If the CRP and ESR did shows inflammation, already i Know it , i was feeling it all the the time. I have to Know somehow about the knee tendons and ligaments etc. If the GP can only provide me with pain killers , yes i am curious to see if a specialist can detect any damage.Will i be able to walk normal again? already my knee is stiff , I am trying to do some exercise

James
I would like to have a GP and a specialist next to my site, yes probably i will need their support for the future.
I was demanding at the last visit, because previously i felt that hospitals and GPs trying to avoid me and just send me home with painkillers with many side effects. For me is not the point to stop the pain but how to stop the inflammation caused probably from our immune system which is trying to fight the klebsiella in our guts. Am i right?

Molly
thanks for your reply and for the important information you just gave me. More study for me for now and later.
yes i will try to be nice to GP . I think i am nice but yes they don't like to be told. But even GPs they have to study, Don't they?
How many of us end up with serious joints and health problems without a sign of improvement? having all these GPs, specialists and physiotherapists next to us for years is it really help? according to many stories AS comes and goes, but other times comes for good with devastating effects.
my target is not how to ease the inflammation but how to prevent permanently the inflammation
Costas

when/if i find the paper that said entheses avascular, i'll post that.

and my newest rheumy, the one that dx'ed me with undiff spondy actually wrote about the potential cyclic nature of undiff spondy (for some of us) right in my letter. i'll dig later and see if his or another paper talk about this.