Hi all,

I've been on these forums a few times and have to say you guys are great!

I'm hoping you'll be able to help me with finding a good rheumy. I do have one, and I'm sure he's great for some people, but he's not helping me. I saw another one a few years ago, but as soon as he found out I'm not B27+ he lost interest. Also, he retired a few months into me seeing him.

I know there's something rheumatic going on with me. I had my first flare when I was 14 - it was in my wrist. I was told that I'd have problems with arthritis, and did start having flares off and on in different joints, but wasn't taken back to the doctor about it.

I'm 39 now and this still happens. In addition, I started having a lot of pain in my lower spine in my early 20's (also had some at 14 and on, but not this bad). The pain has been 24/7 since then and has gotten so bad I can hardly stand it. The discomfort feeling that comes with it almost triggers an anxiety attack at times. You can see a post I created a couple of years ago asking about enthesitis - I describe my pain as the tissues tearing off the bone.

Something else I now think is related, is the pain I've had off and on in different parts of my feet and hip bones since I was around 14 - again, that tearing & heat.

In my teens through late 20's some of my toes would swell, turn red, and hurt like crazy. My rheumy insists that none of the joints are fused, but I know for a fact that 3 toes are in one joint. They no longer move!

I've gone through flares in the end joint of one of my fingers - very red, swollen, hot, and painful.

When I was 17 I had a severe bout of iritis out of the blue and almost lost sight in one eye. They had no idea why it happened, but they also didn't know about all the flares I was having.

Psoriasis runs in my family, and I developed it on my scalp and a couple of other small spots in my late 20's.

I seem to get hit with things like pneumonia and kidney infections with little to no warning, and doctors always say they can't figure out why because there seems to be "no reason" for it.

My current rheumy has gone from a probable diagnosis of psoriatic arthritis to pretty much dismissing me. I show signs of degeneration in my spine, but he expected to see serious problems in the scans and seemed disinterested when he didn't. I asked him if I could have enthesitis and he laughed and said no. How does he know?! He barely examined me and I've never done an MRI with contrast. You can even feel the heat coming off that part of my back.

This pain in my lower spine is just out of control and I can't take it. I really need to find a good rheumy who isn't going to ignore me because I'm not B27+ or walking with a cane.

If any of you could make a suggestion I'd really appreciate it!

Thanks!

Hi. I'm in Australia but we have many delightful Canadians here. Just replying to bump you back to the 1st page where people are more likely to notice your post, and hopefully provide a helpful reply. Good Luck. Felicity

Hi and welcome

Dr. Gladman at Toronto Western is best in her field. She deals with Psoriatic Arthritis, Psoriasis, Lupus, etc.

Hugs
Gerri

Hi there, I agree with Gerri. If you can get a referral to one of Doctors Gladman, Inman or Gordon at Toronto Western's Rheumatology Clinc, that would be great. I have personal experience with all three (Dr. Gladman through my sweetie, who has Psoriatic Arthritis) and they are awesome. To my mind anyway. Dr. Gordon is (or was a few years ago - I'm not 100% sure he still is) editor of the Journal of Rheumatology and was my first rheumy and while he's got to be close to retirement now, referred me to Dr. Inman (AS specialist) and referred my sweetie to Dr. Gladman (PsA specialist).

I know there are good rheumies at Mount Sinai and I believe, St. Mikes, but I can only speak to the amazing treatment my sweetie and I have had through TWH.

Hope that helps. It can be a long, frustrating journey to diagnosis.

A couple of questions:

Do you have morning stiffness upon rising and if so, for how long?
Do you get worse in the evening, with back pain interrupting your sleep?
Is your pain symmetrical (i.e. if one wrist hurts, so does the other one) or asymmetrical (i.e. only one side hurts at a time - albeit in several different places at once)?
You've had iritis, so that question's answered.
Family history of Psoriasis, so that question's answered.
Have they tested your blood for inflammatory markers and if so, were they positive (or was just one [CRP] positive, as the other [ESR] doesn't always show elevated numbers in people with AS)?
Have you had an MRI or nuclear bone scan? If not, see about getting one (I prefer the nuclear bone scan because it shows exactly where in your body the inflammation is).

The HLA-B27 tissue type is found in about 6% of Canadians, but in about 93% of people with AS, so a negative test (and these can come out as false negatives for some reason I've never understood) does not necessarily rule out AS.

And check this out: ASAS Handbook

It's a new set of diagnositic criteria that has only recently been published.

I hope that helps. Keep asking questions here. These are some of the most knowledgeable folk around when it comes to AS and living with pain.

Hugs,

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

You've already had some excellent suggestions but I will just add that the Martin Family Centre Arthritis & Research Clinic at St. Michael's Hospital is always accepting new patients for either an initial full assessment, as well as to offer a second opinion, so this could be a good option also. For either hospital, you will need a doc's referral first of course.

Hope you enjoy KA!
mig

Dr. Dunne is also great! I have only seen her once but she sent me straight away for an MRI, blood work and xrays. I know she also is accepting new patients. Good luck with your search.

Samantha

Thank you so much for your responses! I figure that the rheumy's you praise here at kickas.org are probably my best shot at getting help.

I'm going to look at getting referred to one of them, but in the meantime I'm going to make one last ditch effort to get my current rheumy to refocus his attention on my history and current condition.


Inanna, here are my answers to your questions:

1. Yes. It generally gets better in an hour or so, but a nice hot shower helps a lot.

2. Later in the day I start to get more stiff again, especially if I have to stand or walk for more than a few minutes, but it's not as bad as in the morning. Out of desperation, I have 3(!) foam toppers on my bed to help me get comfortable and use pillows, but I still wake up with more pain and stiffness.

3. Asymmetrical.

4. Iritis...nightmare!

5. Psoriasis, yep.

6. When I had my first flare at 14, they ran blood tests during and after the flare. Doctor said I "tested positive for arthritis" during, but not after. This was back in 1985, so who knows what he was referring to - people didn't really question their doctor for specifics back then. The hospital I saw him at is thinks they still have my records, so hopefully I'll get a copy and find out. Over the past several years my ESR has always hovered around 30 regardless of how intense the pain has gotten. I just checked a copy of a blood test 3 years ago and my CRP was 16.5 mg/L. A little over a year ago it was 7.4. No idea what it is currently.

7. 3 years ago I had an MRI, but nothing much was said about it that I remember. Need to check into that again. I also had a bone scan which showed damage in my right thumb and index finger, left knee, and right foot. My understanding is that neither of these tests show inflammation unless done in a certain way. I know for sure the bone scan was just supposed to show bone damage already done. Is there a variation on it that shows inflammation? And does the MRI have to be done with contrast to show inflammation?


I know that most people with AS or PsA are B27+, but it's not all people. That's why it frustrates me to be dismissed on that alone.

I'll take a look at that handbook - thanks for the link!

Thank you, everyone!

I just wanted to add that I was diagnosed with Osgood Schlatter in my right knee when I was 12, and two months later Scheuermann's in my back.

I do have Scheuermann's, but I now believe the diagnosis of arthritis was missed - the pain was in my sacroiliac joints and very bottom of my spine. I also believe that the Osgood Schlatter was a misdiagnosis, and was in fact my first flare of enthesitis. I never had a very big bump on my knee, so it could have been from the inflammation. I've also read in several places now that enthesitis is often misdiagnosed as OS.

It wasn't until 2 years later when I had my "first" flare in my right wrist that I was sent to the rheumatologist. As I mentioned before, I only saw him twice, before and after the flare, and was never taken back as was recommended. A couple of days ago I contacted the hospital where I saw him in 1985, and they think they still have the records. If so, I'll get to see what blood test they said tested positive during the flare, then negative after it. Hopefully that will be helpful.

What really led me on to the misdiagnosis & missed diagnosis was a search on enthesitis that landed me on a page about Juvenile Enthesitis-Related Arthritis (ERA). It was like looking in the mirror! The pain I had (and sometimes still do) in different areas of my hips, my pelvis, my knees, the iritis...it makes me so mad that my parents didn't take me back to see the rheumatologist when they were supposed to. I eventually stopped telling anyone about my pain because either no one listened or no one really helped. To think, this all could have been solved years ago and I could have been having help with my pain.

Anyway, I do thank you all for your input - I'm going to give my current rheumy one more shot with the new information I've remembered and hopefully he'll pay attention. I'm not sure that I have AS specifically, but with all this inflammation around my spine for so long, along with my history, it must be some form of spondyloarthropy.

Thanks for letting me vent my frustration here!

Theres a very good Rheumy in Barrie just 1 hour north of Toronto named Dr Kenneth Yuen. He has helped me more then all the doctors i've seen put together. Look him up.

Aw, snowcrystal, you have really been given the run around, it sounds. I am so sorry that your parents didn't realise the extent of your pain and take you back to see the Rheumy when you were young.

One would think that with all of your symptoms and history that it should not be difficult, now, for you to receive a proper dx. I'd be kinda surprised if you weren't actually B27 positive, considering you've also had iritis. If your Rheumy is open to it, I'd ask to be re-tested.

Was your past MRI specifically of your sacroiliac joints? Even a plain standard xray of your SI joints might be enough to show damage, but if not, a nuclear bone scan should highlight active inflammation. MRI is the gold standard but a new Rheumy (here in ON) is apt to start with a basic xray first.

By the way, we have a few members in the southern Ontario region that *occasionally* get together in TO for dinner or drinks. Keep an eye on the party forum and please feel welcome to join us, the next time we meet up! You too, Eloney!


Cheers!
mig