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

Back yet again!
I don't have alot of time as I'm sneaking on during lunch, but thought I'd pop in and give a quick update.

After having gone to my doc a week ago and asking for a referral to Toronto Western I got a call from the booking woman at my doctors office...
She said... We put a request into Dr. Inman and his response back was that he doesnt' deal with "that kind of thing".... I asked what "that kind of thing" was.... Her response was "osteoarthritis"... I said.. oh, I wasn't ever informed that it was thought I had that!

I asked if she could please copy whatever papers it was that they sent to him when they requested..
Papers I got back, I didn't bring to work, but there was included in it a letter from the old rheumy that I saw two times in newmarket... in it there were mistakes.. Saying I hadn't had any fevers or chills or feelings of being unwell.. HAD for months on and off.. but didnt know it was related...

There was ONE labe report saying that my CRP wasn't elevated and I was ANA negative???Don't recall when it was done or it was during the time I was on Naprosyn?
I did get the CT scan results which indicate as far as I can remember Moderate osteoarthritic erosion of facet joints from L 1 to S1.. worst at L 4, L5, and S 1... that I had osteocyte lipping?? and some sort of cysts adjacent to each of the damaged facet joints??

So the reply was NO we will not see you!
I just don't know where to go from here.. Maybe it is another form of arthritis and all the other symptoms are common with it?? Maybe its all in my head and the pain I have Every day for the last 11 months is simply this erosion?

Can I ask...
What type of damage does AS do to the spine? How do they tell the difference btwn the damage another form of arthritis would cause and AS? Should I also have so much pain in my shoulers and arms, fingers, SI joints etc up my spine to my shoulder blades.. all this just from this other arthritis???

Im so frustrated I don't know which way to turn....

*sighs*.... some days I just want to give up!

Hope everyone else is having a much better day today..

Tracy

Get back to the doctor's office and putt horugh your request and this tie ensure that they make it for AS - NOT OA (she could well have made a typo!)

This is a crazy situation. You gotta put yr foot down gal. Any chance of getting back to yr old doctor in Toronto? That would be the best course of action, otherwise you must bang on that door again. Just be *firm with the booking secretary. Idiotic state of affairs. Far as you know you do not have a DX for OA... What a mad house to be dealing with - are these people qualified or did they buy their credentials from Walmart? Sheesh.

Go get tough..........

Hi Tracy, and welcome to KA from yet another Ontarian!

I'd suggest you try again. You are certainly entitled to a 2nd opinion... and with your symptoms, it does sound more like Ankylosing Spondylitis than Osteoarthritis (which can be quite painful too by the way, and still an unpleasant diagnosis).

Osteoarthritic damage is a similar process to the damage seen in AS, although with AS it goes further as bone-remodelling occurs (which is not usually evident within the first couple of years) - I imagine they are not always simple to tell apart, initially. An expert should be able to distinguish the slight differences between the two on x-ray/MRI, but in such an early stage, I bet it is not easy by imaging alone.

TMJ and heel pain are more suggestive of AS, so I would point out this fact to your GP and kindly ask them for a referral to another rheumatologist (or to pursue the referral to Dr. Inman) for *a second opinion on your diagnosis*. Perhaps ask them to add to the letter that you question your diagnosis and specifically want to be re-examined for the purpose of getting a second opinion.

For options -- you could ask to be referred to the Martin Family Centre at St. Michael's hospital, if Toronto Western won't accept you. Ask to see Dr. Rubin - he is terrific. Or, you could ask for a referral to Markham Stouffville hospital to see Dr. J. Lewtas - another extremely good rheumy.

Good luck and don't give up!
mig

Hello there Molly and Mig...

Thanks again for the great advice..
I'd like to say Molly, the GP has NO clue what's wrong in any way.. He's only taking his information from the CT. He has from what I've heard him say and seen him do.. NO idea of any Rheumy information whatsoever.! I told him that I disliked the Rheumy I saw in Newmarket and told him why. I asked him for the referral to Toronto as I wanted to get it figured out, but as far as I can tell, he's quite happy to do NOTHING and simply state to me that is arthritis, and it happens as you age.. Thats basically ALL that ive gotten from him. The woman on the phone would be going by HIS direction in stating the OA DX. I'm assuming that he didn't put much effort at all into making the request and I know for a fact that he wouldn't have said ANYTHING about AS because when I've tried to speak of it he has no clue what Im talking about. So its ME who has put this all together in my search for answers as I was getting so little from the GP.. In fact less than none from him. He doesn't seem interested to even see me when I do show up, let alone figure out whats wrong.!!
I am going to HAVE to go see my doc in Toronto and re iterate the whole crummy story over the last year to her and tell her what I think... and I say this bcause sorry to be so blunt, but I've now got blood in my stool and I won't go to this guy in any way for that, especially now that I've had such frustratting time with him.

I may actually look into the other options you gave me as well Mig, thank you... I'm so tired of trying to figure this out on my own it seems. It should be that my doc is fighting to help me get my life back, and yet he seems to be totally disinterested...and as Im sure so many have felt, it's heartbreaking!
I don't have close family, nor a partner for support or backup.. and I can't tell you how nice it feels inside to know that I can come in here when I need to talk..or ask questions.. or even just to vent... cause theres just no one else to do it with...
Thanks all
*big warm hugs*
Tracy

Tracy, If you have blood in your stool, you need to be seen by a GI. I would insist that your GP give you a referral immediately. Without proper treatment you can find yourself in big trouble. I have ulcerative colitis and I know how serious IBD can be. If you do get in to see a GI, you will find that the same meds that treat IBD also work for AS.

Donna

Flippin Norah Tracy - you do need to get to see someone who know 'what' they are doing! 'Do no harm' springs to mind, and doing nowt when he should be a'doin is just as much a part of 'do no harm'! Print off some information for him, fet his education started and then dump the fella. Get thee back to Toronto to your erstwhile doctor, and take it form there. At least now, you have a pretty good range of specialists to consult with. And, as Donna said, don't put off the gut issues. Blood in the stool aint to be fooled around with.

Lordy, what you are having to go through is plain crazy. Can you report this lazy nincompoop to higher authoritity? Just think of others he is mistreating, mistreating by plainly NOT treating. Needs a darn good kick in the pants, that guy. Sheesh. Am soooo angry and upset for you. Send the rotties in - GGGGRRRrrrrrrrrr

Yes, the only way Dr. I would not see you is if he were under the impression that you had osteo. His specialty is AS. You might try Dr. Gordon at TWH, as he does more general rheumatology.

If you have syndesmophytes or 'whatever' kind of phyte on the vertebrae, the way they are growing will tell them whether it's AS or OA related. I have one in my neck that they're still uncertain about. It's currently growing straight out, but it's still early days. If it curves down toward the other vertebrae, then it's AS; if it doesn't, it's OA.

Or try the guy Mig recommended. You need to know what's going on so it can be properly treated.

Hugs,