Good for You, gilth:



I hope You can succeed in making physicians more aware of AS and how to diagnose it, but they will resist learning about proper treatments; that is left to Max Planck's axiom--they must die off and be replaced by more competent practitioners of the art.

You mean, during active phases of the disease You have never had an ESR or CRP test? Despite the fact that Voltaren once worked for You? And nobody has suspected AS but You have signs of PsA? You have not had radiographic SIJ evaluations by competent technicians?

And NOW they make ridiculous claims about Your "hypochondriacial anxieties?" This guy is the real Theodoric of York, and deserves this month's distinguished Medieval Barber Award:



I hope You can do the world a favor, even one charlatan at a time...(let us know if You need any help)

HEALTH,
John

Yes, I know where you are coming from. I also had someone years ago decide that all my pain and disability was psychological, and my GP does exactly the same kind of referral letters - always starts off saying that, which I am sure colours the way any consultant will then look at me. The stupid thing is that before I came to this country 10 years ago, no-one had ever considered that any illness I had was psychological, and yet now they are saying here that I have a life-long history of it. Oh well, you know what they say, life begins at 40. Well, it must do, if they ignore everything before that.

The awful thing is that once you have even the vague suggestion of a psych abnormality, everything you say, every time you argue, every time you disagree - it all just reinforces to them the psych abnormality, not the physical problems. I honestly don't know how you fight this kind of thing.

Well...I have an idea how. First of all, for me it was never a shame to have an anxiety diagnosis. It was a relief to have an explanation for all the weird things that happened in my body. So you could well say I embraced that diagnosis for the better part of 15 years. The fact that I discover that it may have been wrong in the first place after that is a completely different matter.

But without the stigma (at least to myself), and in a trusted job with a huge responsibility and security clearance, I have a starting point. I was actually examined at the national anxiety center back in the day, and even they thought it a rare and odd form of anxiety, AND they concluded that I "have no personality disorder apart from the anxiety". I actually have papers I am sane, not everyone does *grins*.

I would far prefer for a diagnosis once I tell my story, it would only serve to strengthen it, but even without I can from the standpoint of a "fully functional tax payer" tell a story of how the medical services have utterly failed somone that has just complained of pain. Never asked for a painkiller, I never asked for sick-leave.

And they have answered that by no pictures whatsoever of spine above the lower part, none of the neck, none of the jaw and an attitude that is despicable throughout. What then of the ones that could not find strenght to fight them? How many thousands or tens of thousand are there, just in this country? -What happends to them, and how dare they complain people end up with disability?

And I think thats an angle that the media could well find interesting.

Maybe I'm wrong, but I actually worked in a radio station as a producer once, so I'm usually not wrong about media

1. You know I'm in your corner!

2. You know I've been through similar. Maybe no letters that said "anxiety of diseases" but often not much better. My retired GP used to refer to my pain as "discomfort" Discomfort my %&$#!

3. A fibro DX (that was wrong) got in my charts. Getting it out was hard. Finally the out of town rheumy that DX'ed me wrote "does not show any evidence of fibro", that seemed to help.

4. How I got the DX, finally. Paid for all my medical notes. Included only the ones that were helpful in a packet. Gave that to the out of town rheumy. Paid to go to the out of town rheumy with a chart that did not include the misleading things like "fibro" or "patient has discomfort in her back". My GP wanted to send the packet on; I wouldn't give him the address. Good thing, as the letter he was prepared to send once again was not helpful.

5. It can be hard to get a clean slate. I remember a "mystery diagnosis" episode where the doctor said "i don't want to see the file, i want you to describe your symptoms to me, and let me figure it out." he didn't want to base his decision on what others said, but on what he saw. When we have a long history as a patient in the medical system, we need to find a doctor like that, IMHO.

6. Hey, if you got influence, go for it (the media).

7. And, a piece of advice, from personal experience. Once we find the doctors that are helping us, we can't hold on to the anger; it only hurts us. Whenever I start to get negative feelings about someone from my past, I start thinking about the good people in my present. Still working on this one myself. Its hard to not be angry for all those years wasted, lost, in pain, messing with our careers.....whereas in my case, if i had just been given a medrol dose pack now and then, that alone would have helped tremendously. Something so simple. If people spent more time trying to help, trying to solve problems, it wouldn't take any more energy to just do that, instead of the unhelpful things that many do. But, we have to get over it.......

8. Good luck, as always!

Gilth,

Did you ever have skin psoriasis? My son has psoriasis on his skin and has since he was born. I'm not worried but keep my ear out to hear of any aches and pains afraid then that it would turn into PA.

Why can't the dermatologist diagnose psoriatic arthritis and not just psoriasis? I know i'm being naive here, but if he/she has dx'ed psoriasis and you have joint pains, etc.....or why can't the dermatologist prescribe something for the psoriasis that would work on both the skin symptoms and the rest of the disease symptoms? or why can't the dermatologist refer you to a rheumatologist or at the very least write a letter back to your GP stating that you have psoriatic arthritis or psoriasis and thus need to see a rheumatologist ASAP?

When my insurance initially required me to get a referral from my GP for every specialist, when I asked the GP to see a new specialist not already being seen by me before the insurance switch over (he let me see doctors i'd already been seeing), he told me I was already seeing "a stable of doctors" and thus seeing X would be unnecessary. Or if I wanted a particular test (blood work, imaging) or med to try, he'd tell me it was unnecessary or "dangerous". But when one of those other specialists suggested it, whatever it was, from referral to another specialist, getting a test done, trying a med, whatever another specialist recommended, he was right on the case. So, my requests fell on deaf ears, but specialists' requests were fulfilled immediately. Thus, when a specialist told me to do something (through my GP), i got in the habit of saying, "put it in a letter to my GP please". Like when the physiatrists (doctors of physical / rehab medicine) or orthopedists said, "You need a rheumatologist", I said, "please tell my GP that." Couldn't that dermatologist do that for you? If your GP won't listen to you, wouldn't he/she listen to another doctor perhaps?

I do now Pea, thats what I am fighing to see a rheumy about again now.

I have skin psoriasis on my upper arms, elbows, knees, belly button, and inverse Psoriasis on the sides in my groin.

It is completely new information, just 7 or 8 weeks since diagnosis, and I know it sounds weird it hasnt beeen discovered before with that many locations, but it isnt that visible, and on elbows and knees I thought it was just dry skin. On the upper arms, I have been told by a former GP its "just aging symptoms of the skin" (I'm 37). In my groin, GP has classified it as eczema earlier (wong again, you incompetent twat.) So I went with what they told me...

On an added note, I suspect that when I initially got problems with my jaw back in my early 20's, I also had a bout of skin peeling of my entire ears, they thought it was a cold damage. Perhaps that was Psoriasis as well for all I know. And I have had some smaller signs from the back of my head and behind my ears, wich most certainly has been small patches of Psoriasis, knowing what I know now.


Oh, and wanna hear an added oddity?
For almost 2 years I have struggled with the inside of my nose. It's been kinda hand in hand with the joint pains. It started with dryness, and itching. then it joined up with a bacterial infection. (proof positive as I have constant signal green slime, and validated by the GP). When I was on Voltaren, it literally exploded, the only thing coming out was large green clumps and blood. It has at times been so bad it feels like my whole inside of my nose burns when inhaling.

I told the GP about it after a year or so, he said it was bacterial, gave me an antibiotic cure, and my nose was so much better! -Finally normal, no slime and less dryness. Then 2 days before I finished the cure, it rebounded. So when I quit the tablets it took a day before being as bad again as before. His response: "that sounds weird, I can't understand that". And no furter treatment.


Now I know something I did not before....Psoriasis can actually hit the inside of the nose. Psoriasis is often made worse by NSAIDS. Skin affected by Psoriasis is frequently infected. (wich is why cortisone cream is often antibacterial/antibiotic as well). Oh, and both Psoriasis and PsA can be kicked off by infections. in the case of Psoriasis, "often upper respiratory infections".

Is that what has happened? -Well, now at least I can find out. Would be nice to have a sence of smell again

I agree with you on the dermatologist Sue. Psoriasis is a skin disease of a special type, as it has its very own brand of arthritis. Certainly a dermatologist should be able to make an initial diagnosis of PsA and refer on to rheumy, in my eyes too.




I'm playing out various scenarious in my head to be honest;

1. They send me to a rheumy, and the rheumy concludes I do not have PsA with no further tests or pictures....what on earth I'll do then, I don't know frankly. In any case I will ask/demand pictures of my jaw and neck, where I myself, subjectively, feel the chance of seeing bone or joint damage is highest. (I am positive that sounds (popcorn noises, crunching etc), pain and feeling to the joints is changed these last 2 years in both, to the worse. Will that show up on pictures yet? -I have no clue, but I want to know)

2. They send me to a rheumy, wich orders pictures, and conludes no PsA. Christ.....what then? ...bite it up and wait for 10 years until damage is visible?


Both of these first ones, given my past experience with health care for me are highly likely

3. They send me to a rheumy, and he/she conludes PsA, but does not order pictures. I know excactly what happends in this scenario. I'm hopping on a plane and going to the Mayo clinic. Yes, seriously. If I get a diagnosis, I want all the answers and ammunition for a showdown with healthcare.

4. Rheumy concludes PsA, including pictures and tests.....-> Healthcare inc will never know what hit them.



I'll prepare for the worst, and leave a tiny tiny fragment of light for hope I get some answers at last.

Trying to see things objectively:

Am I whipping myself into a frenzy because of a small Psoriasis diagnosis? -Perhaps, anything is possible, I will certainly not say it isnt possible. If I did, I would make myself as large an idiot as my GP has been.

But on the other side, I have now for 2 and a half years complained to my doctor about:

fatigue
jaw joint pain
neck joint pain
back pain
lower spine(SI joint pain
morning/evening stiffness in spine
morning/evening stiffness in hip
morning/evening stiffness in neck
pain goes in flares
pain does not get touched by non-prescription pain killers
NSAIDS (Voltaren) relieved fatigue and pain
warmth/cold packs give relief
painful points in spine actually feel warm to the touch
bouts of chest pains on the sides of the breast bone. (terribly painful)
spasms, and muscles in back and neck far to prone to cramps.
nerve pains and signs of neuropathy (wich for some reason got far worse while on Voltaren)

And through it all no positive blood work.
And then I get a Psoriasis diagnosis out of the blue.
I think I am not that mad to want a new assesment by a rheumy, do you guys?

Karen (Karen the Mouse, who used to post here) went to Mayo, and came back with a new pair of orthotics. That's how she chalked up here very frustrating experience there. And she and I seemed like twins in our arthritis symptoms. That was the main reason i chose not to go to Mayo, and instead decided to go to a specialist who's journal articles seemed the best at differentiating AS vs undiff spondy. If you live close enough to fly to Mayo, maybe consider the guy I went to, since we have so much common history (as you've said yourself). Of course knowing what I know now, I (and you) have a lot of non arthritic symptoms that karen didn't have, so maybe my experience would have been different. Still, I'm glad I took the route I did, but that's probably because it was successful.......it just seems like such a crap shoot sometimes.

Thus no sense in thinking up scenarios, cause it will be one you didn't even dream up. Just go to the doctors til someone helps you feel better. Its all about results IMHO. Once you find a doctor who tries to heal you, instead of trying to keep you from treatment, it will be like night and day, trust me, been on both sides now.

Also, don't be sure sure about the imaging. Turns out I have pretty significant bone spurs in my neck and they are pressing on nerves and make sitting a real challenge most of the time, and when I flare, they make sitting an impossibility. But, the MRI reports say they are mild. But when the interventionalist went in under fluoroscopy to inject the facet joints where the bone spurs were, he was surprised that the radioloigist's report was so conservative. I swear they seem to downplay what they see, or only think severe damage can cause severe disfunction, or.....I really don't know what's in their heads, but those reports have done me more harm than good, til i found doctors more interested in symptoms than reports. And if you can get a doctor to look at scans, even better. Also, my SI, nothing in the xray reports, and only mild to moderate (i'd have to look at the reports to remember) degenerative changes in my SI on CT scans (my old rheumy tried to convince me it was a simple case of osteoarthritis!). And the MRI didn't find a lot of inflammation in the SI as it wasn't flaring when I went. But, when it flares, i'm incapacitated. And even when i think it feels pretty good, it tightens up in a scary way if i try to do any sweeping, mopping, vacuuming, anything that causes the wrong motion there, or if i bend over for more than a second, it tightens in that scary way as well. And yet, according to scans, it isn't that bad.

If i were scanned during a flare, it would probably be a different story, but if one can't even go from the bed to the bathroom, how does one manage to go in for scans. Well, in my case, I no longer have to prove anything to anybody. The doctors believe the symptoms and are treating me accordingly, but boy it does take a long time to get to that point. Still i think it boils down largely to who the doctor is, when one has our symptoms, though in hindsight, I don't know why. It just seems so crystal clear now.

You'll get there.........just don't wait as long in between as I did to find new doctors. I spent too long second guessing myself, wondering if maybe they were right, getting confused......if I had just moved on faster.......but we are not doctors, thus what amazes me is that the doctors didn't see this for so long, well, some did: the PTs, the physiatrists, the orthopedists, but their letters back to the GPs didn't do any good, and then all those rheumies......you've already spent a long time, so just proceed faster now, i wish i had.

(italics from rumble)
I'll second this about the imaging. If you can get a doc that wants to treat the symptoms (like my pain mgmt doc), then it doesn't totally rely on the imaging results. Before I had a good firm diagnosis, I asked my pain doc to do an MRI of my SIJ because it was obvious it was a source of pain--she had injected steroid successfully AND it responded to RF nerve burning for pain control--but I was struggling to find a more firm dx. That MRI was normal (and I had trouble getting off the table) and I lamented to the pain doc that I just knew something would be wrong because it hurts so much. She told me she believed me and that imaging was the end-all for treatment. Gilth, I know you aren't getting good treatment yet, but I believe you will eventually, but you will also have to fight for it, sadly. Don't give up.