Just got a letter from my rheumy, following my first ever visit to her.

She states:



Damn my stupid body for not wanting to give up this on any tests. She did say she wanted a new ANA test, and only if that was positive, she wanted a lip biopsy for the dryness issues. They havent been positive the 2 times I have done them, so I'm not even going to bother getting my hopes up for this time.


Now, to try and keep a calm head about it:

Positive:

She was very clear on my doc being silly trying to pin this on anxiety.

She said to contact them at any time if I got worse.

She said to follow up on some signs I've had that may be psoriasis with a skin doc. (Already arranged for, but it dissapears in summer and comes back in winter, just waiting for it to kick in before I go back to him and show it)

She put me on an anti-inflammatory, and after 8 days on it now, it feels a litte positive. My whole body feels a little less painful and easier to relax. I wake up better rested. Pains are in no way all gone, but its a massive improvement anyways.

Negative:

I have tried to tell her, and my GP that this is EXCACTLY what I had 16 years ago, and then again 8 years back, and they gave me an anxiety diagnosis for.

She didnt want any Back, jaw or neck pics ordered as I had too good mobility.

The diagnosis she is running with is virtually non-existant medically, wich means I dont feel I casn take it to work to ask for a better chair or different working hours for example.



I may think of more later. Have to get to work now.

Any comments?

Love
gilth

On the positive, it's good to hear that the anti-inflammatory meds are helping a little.

Sorry to hear however that you are no further along with dx. I have read here others talking about a number of medical problems that cause AS like symptoms. Perhaps one of the more knowledgable members will be along to give you a heads up on where to go next in seeking some answers.

"She didnt want any Back, jaw or neck pics ordered as I had too good mobility."

I hate to say it but if these areas are realy troubling you make up a story to say you injured them just so you get the pics ordered.
I know this is wrong but I was told a similar thing 15yrs ago when I was still playing A grade squash so I said I had a fall. pics were ordered and found so much damage in my back they couldn't believe I could walk let alone play sport.
Some times you just have to massage the system a little and I think it is discusting it has to happen but you are the only one you have to fight for you.

All the very best and keep up with the updates.

I'm sorry this happened to you. Can you go to another doctor for a second opinion? Ask a freind, relative,or coworker if they can recommend a good dr. Another doc may have a completely different letter and may be able to help you more. I'm not afraid to change doctors and find one that has a good beside manner. Vitals.com and healthgrades.com have reviews of doctors and maybe you could search those websites and find one with good reviews.

Hope it all works out, take care.

So how does her evaluation sound to you that know more than me about this?

My GP has taken the "regular bloodtests" ofc, but nothing turned a red flag yet, apart from somewhat elevated trombocytes. The Rheumy didnt order any further tests.
HL-A B27 negative, IS-joints MRI negative (although taken 4 months after I first got real pain in lower back and hips, and at a time where they were painfree, and with no contrast given). From what I know I've only ever seen one thing phsyically swell, and thats ribs. Twice.



But nothing of that changes the fact that I get sickeningly painful in my jaw and neck. My lower back / hips flare at the same time almost always. Ribs in the front and back get very very painful. Muscle cramps, stomach, hypersensitivity, nerve pains, dryness of mouth, eyes, ears, sinuses. All of these due to a "reaction to an infection".

Three times in my life so far in a big way, and lingering in between. Each time a ""major flare" hit me it cost me well over a year to get somewhat better.

Do they even listen to themselves and think: "Is what I'm saying now even plausible?" -I suspect they do not.

But I WILL hound them until they dig up some proof they can accept as evidence of a diagnosis. I k n o w it's there somewhere. You do not feel this bad and not have some lasting imprint on the body.

1. since you get skin "rashes", be prepared for them.

a. get a referral to a dermatologist if you need you, make sure you are an established patient, so when it comes, get in ASAP so they can see it flaring. my dermatologist said i could come in and get seen quickly so they could observe whatever was going on and biopsy it.

b. whether a dermatologist sees you when the skin flares or not, take some good photos of the skin stuff and have them on file. i'm so glad i started doing that. a picture truly is worth a thousand words here. having the photos of my nasty looking rash over the SI makes the doctors cringe and makes what i say a lot more believable. seeing the rash on my legs in photos made the last two rheumies, the good ones see that it looks "autoimmune" in their words.

2. i think, based on my experiences in similar circumstances, that it is best to just find another doctor. i really thought for a long time that if rheumy #4 just saw me in a flare, then he'd understand, then he'd prescribe something to me, then he'd be convinced and help me.....but the additional help i got when i flared was not nearly enough. nothing compared to how the rheumy i have now is trying to help me. i just think people get a first impression stuck in their heads, and then that is that. i've never had a doctor have a change of heart, even when they saw me go from ok to bad. i've found moving on to be the only solution, but that's just my experience. jewel, who used to be on here, went to 8 rheumies before she found someone who even admitted that she had inflammation (kind of like my experience but with going to fewer (5) rheumies to get to that point).

3. if you have something like i do, undiff spondy......

well, i'm HLA B27 neg, RF neg, ANA neg, CRP and ESR have never been above 10 when tested (though also never tested at my worst when flaring cause i'm too bad to go anywhere). so nothing really shows up seriously in my blood work. though my current rheumy, naturpath, and endocrinologist all think that close to 10 is too high for CRP and ESR while the other doctors were not concerned, sometimes it really is a difference of opinion. and my white blood cell count is always borderline high; not enough to be alarmed, but enough to get comments for years. at first the doctors assumed i was sick, then maybe allergies, but now they think its an autoimmune thing. so i didn't get dx'ed based on blood work.

as for the scans, nothing incredibly impressive. some damage in the neck and SI and lower lumbar as seen by CT and MRI, but low enough that could be chalked up to "getting older". i've had a bit of inflammation show up in the nuclear bone scan, but could only get approved for it when essentially over a bad flare, and not much showed up in the MRI because again by the time i was approved, was wearing a flector patch which has taken much of the inflammation away. the rheumy that dx'ed me said that these things can be highly cyclic and if we are scanned / tested when not in a flare, not much may show up, if we have "just inflammation" without fusing. so i didn't get dx'ed based on scans.

but the first few rheumies tried to dx me based on tests vs symptoms and putting the puzzle together. the rheumy that dx'ed me and the one i have now, see that the combination of symptoms of inflamed joints, GI troubles, dry eyes, skin rashes, the fact that it flares so dramatically, the fact that antiinflammatories like nsaids and prednisone work, and a strong family history of inflammatory arthritis, point to inflammatory arthritis. any one part of that could be explained other ways. but all together, those kinds of things are inflammatory arthritis. like you explain your symptoms.

so i think finding a rheumatologist that is good at diagnoses, that can put all your symptoms together, in a way that makes sense (i hear you with things needing to make sense) is what you need.

but to me, the most important thing is, "are they treating you and bringing your symptoms under control?"

and too, i don't just rely on the rheumy, he's for getting the inflammation under control. i have a podiatrist for my feet. GI doc for the GI. eye doc for the eyes. derm for the skin. endocrinologist for the endocrine stuff (thyroid, adrenals). naturpath doc for thinking about things holistically. PT and/or chiro and/or physiatrist and/or pain doc for treating the musculoskeletal symptoms. even now with a good rheumy, i still need the other doctors. just maybe not as much and/or with everyone, i am now getting over my flares faster maybe and feeling better in between. though i need to not flare too, as i lose too much functionality during that time, and run the risk of losing my career, something that almost happened in the past and that i'm trying to avoid.

I think you have got a real diagnosis, and that he is treating it in the way he should be at this time, when your mobility is OK and your blood tests are fine. What is more, you are actually responding quite well and quite quickly to the treatment.

It sounds really strongly that he believes it is reactive arthritis and will go away on the antiinflammatory treatment (diclofenac) plus exercise. That would be what would normally happen. He hasn't taken into account the fact that you have had episodes like this before, but if it wasn't assessed and recorded by a rheumatologist it may be very difficult for him to take them into account. It is of course possible that you could have had more than one bout of reactive arthritis.

My advice would be for you to keep on treating it as a reactive arthritis - the basic first line treatment for any of the AS or spondy disorders is really just the same anyway - NSAIDs, and regular exercise or physio. It will either get better after a few months, or it won't.

If it isn't better after 3-6 months on the diclofenac at the dose he has given you (taken regularly, not just for pain), then go back to your GP and insist on another rheumatology referral. At that point they may change the diagnosis to a different long-term spondyloarthritis. Right now, what I guess your rheumie is saying is that it is definitely an inflammatory arthritis, but one that he believes will be short lived, not life long.

I missed anything about rashes, but if you did have something that looked like psoriasis then definitely ask about seeing a dermatologist.

Gilth - cemc has given sound advice, and, agree with Sue, take photos of psoriasis outbreaks, ensure record date/time of photo (camera might do that automatically). Be prepared to change doctors/rheumies. X-Rays will only show damage way down the line. MRI Saggital STIR tau-1, tau-2 is gold standard. MRI: NEED thoracic imaging, look for those Romnus Lesions, and, oedema.

As on NSAIDs, ensure to take a stomach protector. NSAIDs 'can' do a right number on the gut (mine was/is now/ ruined by them).

Take care -

Hey there,

Good you felt you could come away with some positives. I agree, good that this doctor did not pin it on anxiety.

Hope you can find some answers, unsure why they did not want some photos (MRIs) taken... I imagine cost, but how is the doctor so certain of the diagnosis.

Doctors jobs are very difficult ones.

Take care and best to you in finding some answers.

Tim

Hi gilth, here's a link to information on reactive arthritis. It is, by the way, related to AS, being one of the Spondyloarthropathies.

Reactive Arthritis

And according to the Mayo Clinic Reactive Arthritis Page it can recur; although usually not so long apart as you.

Hugs,

gilth,
we understand, and are concerned for your health. What you said, and sue, is about where I have been for 50 years. always undiagnosed, given Nsaids and stuff.
anable to do simple things, rash at times. negative or marginal on most tests. X-rays change for the better - there for I can't be sick....
I would journal food intake, and take as little medicine as needed. I think you have what we all have A.S.... When we disagree with someone,it just means we have had different experiences.... or arrived at different conclusions.