Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New,and searching for advice.No Dx yet

Morning Molly, yes, Toronto Western is Inman. Dr. Milicent Stone out of Bath was his Fellow when I first started seeing him, by the way.

One of the things I like about Toronto Western is that they already have electronic patient records that they share with the entire University Health Network, which also includes Toronto General and Princess Margaret (cancer treatment). So, whatever specialist I see in the Network inputs the info into my patient record and Dr. I. can see it within minutes on the other side of the downtown core. I get x-rays that are digital, so again, he sees them in about five minutes.

Boy oh boy, the Province has been trying to put together e-health records. They should have gone to University Health Network for a model. They've had an awesome system for several years!!

Warm hugs,

Morning All!

I was aware that they did some sharing but it's so nice to hear they they all share...lol I've been to general, Princess Margaret as well as Western over the years and it's great because some of the issues that I feel got overlooked, that I've mentioned, the doc will be able to see!! Yea! That makes me feel good..Thanks for that bit of info!
lol I feel the same way about my children... and yes I'm biased.. of course.. We're their moms..*chuckle*

Quick question pls... Over my life I had a nice "arch" to my low back.. Then when the pain was OVERWHELMING I couldn't in any way lay on my back..To do the xrays, cat scan was excrutiating and I realized that the arch in my back was HUGE!..it wouldn't go down like normal.. NOW I see that there is so little arch that it's almost flat? Is this something anyone else has experienced? This is only in a matter of a few months... I just find it odd.
Going to appts today.. wish me luck..
Thanks to you all I'm going in with a bit of an attitude and strength that I previously didn't have!

*big warm hugs to you all*

Tracy

Hi Tracy, I've always had a slightly flatter lower back arch. I found it actually became more normal after I'd been doing pilates for a while. Regardless, it's extremely uncomfortable, at times painful, for me to lie flat on my back. It's better if I bend my knees, but who can sleep like that for any length of time.

Good luck today.

Hugs,

Thanks Kat,

LOL Aren't we a funny bunch!?
I find the my left side for now feels alright, but my right is so painful, I make a pile to my right and lean my leg on it..if it goes down too far with leg bent it feels like my hip is going to pop out! lol
I was just telling a friend if anyone came into my bedroom at night they'd laugh their a** off!
The other day my shoulder and arm hurt SOO bad I couldn't sleep.. I had it up over my head all bent out of proportion just to try and find a comfy position..lol and Im pretty sure I looked awful foolish...but what can ya do?

Have a wonderful day filled with less pain?


Off to docs!
Tracy

I am new also and am going through all of the beginning tests etc. I have to agree wholeheartedly with Molly. You MUST demand the tests etc from your doctor. When I read the "IBS LOW STARCH" diet book I just knew I had it. I went to my doctor asked for the HLA-B27 blood test and he also did some associated tests (such as ESR for inflammation and I was also tested for the Rhuematoid Factor) I was positive for the HLA-B27 my ESR was up slightly but no rhuematoid factor. He is a great doctor so sent me to a Rhuematologist (also great) who has immediately sent me for an MRI and a Colonoscopy. I always demand copies of everything after all, it is my body and doctors are not god and therefore do not always know everything, nor are they always right. If anyone knows what is wrong, we do. I am alot more assertive with them these days! I am the customer and they are providing me with a service that I pay for!

Aussiegirl (I live in QLD too! Good ol' Brissy!) - There must be something to the AS test you mentioned earlier (the one where you lie down and put an ankle on your thigh then push down on knee) as that was one of the first things my Rhuematologist did to me on my first appointment last week. He had me lie down though and the pain was so bad in the right side of my spine, I nearly slapped him!

Hi Tarnip,

My understanding is that this is an excellent way to test for genuine SI involvement. Early on in my illness, there was a suspicion that my SI joints were involved but that test (and a similar one) helped to demonstrate it wasn't my SI joints. In fact it was my tailbone that was inflamed but the pain from my tailbone spread through my low back and buttocks so it was hard to be sure where it came from. Just pressing in the area does not pinpoint the SI joints. I can press in that area and have pain - in fact pressure over the "dimple" area produces a bit OW in me but it's not the joint.

The test you described actually flexes the joint. Another doctor had me lie down and leaned on my pelvic bones to flex the joints. Those tests did not cause me discomfort. It can be hard to distinguish between low back pain and SI joint involvement.

Serenity - check out this information:-

http://www.asas-group.org/pdf/ASAS-Handbook.pdf

Ann Rheum Dis 2009;68;ii1-ii44
Dougados, K-G Hermann, R Landewé, W Maksymowych and D van der Heijde
J Sieper, M Rudwaleit, X Baraliakos, J Brandt, J Braun, R Burgos-Vargas, M
assess spondyloarthritis
international Society (ASAS) handbook: a guide to
The Assessment of SpondyloArthritis

Very useful information, and, as you will determine, that rheumy INsultant you consulted with did NOT know her subject... Appalling. Suggest that you also print off the 45 pages and give to yr GP - for the furtherance of his education!

Know that you will find this useful - especially all the informatin on *imaging - note the Saggital STIR, fat supression, tau1, tau2 that I was banging on about. Crucial to good MRIs as you will gather.

Also note the various indices - BASDAI etc etc. You could do these measurements with the help of a chum. Outcomes are interesting. Will need a soft cm tape measure. Also fill in the written indecis, see what your scores are. (Then give em to yr GP, together with a pain map: download here on site, fill in areas with *coloured pencil, purple=very inflamed; red=inflamed; orange=fairly inflamed; blue=NO inflammation. You won't be using blue 'smile'.)

Hope this all helps -

Go well hon - and have a hauntful w'end!

This is an excellent monograph.

You're all SO helpful!
I feel so badly complaining, but this as you all know can be so very frustrating!

I took a look at the site you sent Molly, thank you. I Do see how much they mention both the STIR and the contrast enhanced MRI's, and I know I didn't have either! So far I've had an xray of I believe my spine(not sure how much of it) and possibly si joints, but don't know yet. I also had a CT scan of my si joints I believe and at least part of my lower spine?? Again, I'm not sure.. and finally up until the other day had been sent to a clinic that I don't believe my Rheumy at the time knew much about, but that could get me in faster down in Markham in East Beaver Creek, and that MRI was of SI joints without contrast or STIR..just simply T1 and T2 weighted.
I actually just pulled up the results of this one as I had asked for it long ago and they actually sent it to me...
It reads:

Technique,
Coronal T1w nd T2w and axial T1w and T2w images of sacroiliac joints have been obtained.

Findings:
SI joints are congruent bilaterally.There is no evidence of an erosive or degenerative or inflammatory arthropathy. The sacral ala are intact.the sacral nerual foramina are patent.
No abnormality at the lumbosacral junction.

Interpretation:
Normal examination

BUT... when I was at the doc in the last few days and was trying my best to get answers I did ask him to explain the ct findings, which he started to then changed topics..
and when he did, I remember that he mentioned that from to S1 there was moderate degeneration.. mostly seen at L4,L5, and S1.... so if there is degeneration there why is it that the mri said no abnormality at lumbosacral junction? Is that not the area between L5 and S1?

Anyhow... as it turned out the doc was 2 hrs late and I got a total of about 5 min in his office before he rushed me out to speak to a secretary to try and find out who had ordered the MRI I was to do that eve! And boom our appt was done. I DID manage to immediately upon stepping into his office after a long frustrating wait, to ask him to refer me to one of the Rheumatologists at Tor Western..and thanks to Kat I believe I mentioned Dr. Inman? I hope that was right. Upon asking my doc said..well maybe I can get you into the clinic? I said.. whats the clinic? He said..well you dont actually see the doc!!
I wondered out loud how that could be helpful to me and again asked to see the rheumatologist instead. AND I asked that he give me copies of all my bloodwork, cat scan xrays and mris that have been done since it all started in Dec of last yr... so now I wait!!

At least the appt wasnt a total waste.. but I did find out the MRI booked was in fact the same appt that Dr Thorne(previous rheumy) had booked then rebooked at the place above for sooner results..and had forgotten to cancel...Sooo I went in... spoke to the technician and was told there was no special direction from the rheumy saying how it should be done, so it would be done as per the norm? T1 and T2 Im assuming. ??
I did try and explain a bit about STIR and how i was told that it would be probably a better way to see some of the things they would be looking at, and she said, well I guess i could throw in a round as it wont take too much longer.. so now i wait to see if in fact she did, and if it showed anything!

UGH..sorry so long everyone. So it wasn't a total waste but i didn't really get to say much to my doc. Each time i try and speak he seems to cut me off, or not answer? or maybe it just feels that way? I asked what he thought briefly and he said, well I hate to say it but due to the pain in other major joints aside from your back maybe Fibromyalgia? Yet Ive told him over and over the muscles aren't whats sore.. I can touch my shoulder and its not muscle, its inside deeper or bone?

Quick question pls, before I let you all take a breather from a very long rant....lol
Is it possible to have degeneration etc showing up in your spine, and yet not in the SI joints yet? And is this typical at all of AS or some other issues you may know of?

So sorry again so long... Seems I sure can rant!
Hope all have a wonderfully scary wknd!
*big warm hugs*... Gentle ones!

OOPS... my apologies... I just noticed that when I went to say :from L 5 to S 1... (not laughing face!) the ct said deterioration of some sort?
Oh..and I also have a lump of some sort larger than a "2 dollar coin" directly above and to the right of my right "dimple"(area of si jjoint) on the right hand side? I can feel it on the outside with my hand. Is anyone aware of this in their case?
When I expressed to my doc that I noticed it there right when this all started and its still there, he gave it a quick feel while I stood up and said it's just fatty tissue?

Your doctor makes my puke...

Nor. MRI. When I had my first MRI, it was a standard one, as the radiology dept chose to ignore my rheumy's directions. That MRI showed darn all. She was mad, and sent me back for another round. Saggital STIR tau1, tau2, fat supression. Sjhowed up everythng that was needed for a DX of AS. So, standard MRI, forget it.

Get thee to see Dr Inman. INSIST on Inman. Pretty pointless at first 'off' to just turn up at the general rheumy clinic - and prob be seen by someone green an wet behind the ears. Just put your foot down.

Also, insist that your Dr answers your questions. He wo't after you have left the room, but go in armed with your questions, and pref AWITH soeone to back you up, and fire away. He MUST listen, and tell him so as well - with a 'sweet' smile!

This had me seething. As for CT, try and NOT go there. HUGE radiation exposure, one CT=120 X-Rays, one high resolution CT=180 X-Rays. Unecessary exposure, and, not as good as full go MRI S/S etc etc. As for contrast, try and avoid. Can do a right number on the kidneys, and at the end of the day, unecessary to be put through that. Remember, your body. Just say 'No' to stuff that is bad for you. Get the protocols set up in advance, and insist that they stick to em.

At least that radiologist seemed a bit willing to do a couple of Saggital STIR imaging. But... Sheesh. What are these guys playing at - wasting time and health resources just cause they refuse to get it right FIRST time.

Fibro - NO way. Get him OFF that. Too many here have been STUCK with a firbro mis-DX for years and then have great difficulty in getting it reversed. Get back to your own good doctor in Toronto. Forget about this nincompoop you got yourelf saddled with. He is a waste of space. Bang.

Degeneratio in spine and not in SI joints? Yes. And, women present differently to men. Suggestion. Google all this stuff up. Will keep you occupied for a time, but the answers are out there in papers and monographs various. Print em off and give a cc to you Dr 75% clonker (75% are useless; 20% are farily OK; 5% are excellent).

Bonne courage.