After 6 months of Dr. visits; internal med. Dr., Spine Specialist, Physiatrist (didn't even know there was such a practice), and a Pain Management Dr. plus many tests (and dollars). I finally got fed-up and asked the PM Dr. if he thought that I might have Anklosing Spondilitis of some other condition that might be causing the inflamation in my spine and SI joint? Of course he sain NO.
After the 3rd injection into my SI joint (which gave me no relief) I scheduled an appointment with a chiropractor that I know and trust (should have done this sooner). The Chiro. reviewed the notes, results of tests and scans, and did a short physical exam. He said, " I think that you may have - wait for it . . . Anklosing Spondilitis or an arthritic condition" AHHHH after that I got in my car and screamed bloody murder!!!
The Chiro. gave me a referal to see a Rheumy that he works with. The Rhemy said that I either had Anklosing Spondilitis or PsA . Both are diseases that cause inflamation in the spine and can cause bones or vertabtre to grow (fuse) together. To be sure he wanted me to have blood work done. Finally an answer, I have PsA. Can't say that I'm thrilled with the resulting diagnosis but at least we know what we are battling and maybe we can slow down the damage.
O.K. now my question. How much weight should I put into the fact that the pain managment Dr. kept treating the symptoms and not the reason for the symptoms? Why didn't he send me to a Rheumy or some other specialist? Would you be as p.o.'d as I am?
We have been through very simailar incidents, I went through 5 Pain management establishments, had a myriad of different types of X-rays, Neuro tests, until the rheumatologist ordered regular x-rays just of the SI joint, it was not mentioned, spinal stenosis was not mentioned...
I feel it! I feel how you feel, in more than one aspect, and I feel for you! If you do not think you are on the right path, take another.
NO, I wouldn't, not that my answer makes much sense. The pain Doc would still be doing the same things (and will continue to do the same things which is treat the pain. The Rheumy or your PCP's job was to treat the cause (or get you to someone who can. Its no comfort I know, and makes no sense. Your internist is the idiot. Your spine specialist is in second place. (although I personally think spine specialists are quacks out to make a quick buck in the surgi-centers they all own) As if I'm not cynical enough:
A physiatrist is really not a pain specialist. He is a physical medicine and rehabilitation specialist. Some do injections though few are good at it. (its how they pay their bills as generally they refer folks to PT's and neurologists for painful and meqningless nerve conduction tests. ie there job is to cause pain so you feel better when it stops. Their training is mostly in recovery from traumatic injury. They wouldn't know PsA or AS if they had it themselves (I can prove that one BTW) There opinion is as valuable as mine (worthless)
Move forward. the Rheumy will control the disease and help you find a way to deal with the pain.
Pain management guys are hard to find. But be very careful who you let poke needles in your back.
I was given NSAIDs for two months of severe pain that of course did nothing. They then sent me to PM Dr that did same thing and sent me back to internal med Dr to look at my skin spots ( why not dermatologist I don’t know). He looked me over said the patches on my head and ears were nothing BUT the spots on my privat guy he thought was syphilis! So yes I had to inform my wife that I had to be tested for syphilis (lucky for me my wife is very different from most spouses) so together we laughed knowing that was not the case. After finally a trip to derm he took a little piece off my ear and ran a test and came back psoriasis. He then sent me to rhumetologist who diagnosed me with PsA. So after months of terrible pain he gave me a steroid dose that 8 hours later I was completely pain free. That only lasted a week or two but was much welcomed. Now on methahextrate and doing ok some days not so ok others.
Yes, Buick Boy, I sure would be. It's YOUR body, YOUR pain, and YOUR back being affected. If the PM didn't know, he should have said, "I don't know." Fair enough. WRONG to say, "No, it isn't," if he had something in front of him giving him information to the contrary. Okay, just read lamb's input and I can see where he's coming from too. But I still think that one of those docs should have caught on.
I am truly sorry that you have PsA and Anklosing Spondilitis but THANK GOD you were proactive and went to a Rheumy and got diagnosed. Now at least you can get much deserved, much needed treatment.
Alas, too many doctors making judgments when they truly "don't know." I wish they'd just use those two words if they're flummoxed.
!!! !!! !!! OMG! Yeah, good thing your wife is a sweetie.
Glad you're doing better now, at least on some days. I hope you find the right med that gets you up and going better, very soon.
Redsfan said:
I was given NSAIDs for two months of severe pain that of course did nothing. They then sent me to PM Dr that did same thing and sent me back to internal med Dr to look at my skin spots ( why not dermatologist I don't know). He looked me over said the patches on my head and ears were nothing BUT the spots on my privat guy he thought was syphilis! So yes I had to inform my wife that I had to be tested for syphilis (lucky for me my wife is very different from most spouses) so together we laughed knowing that was not the case. After finally a trip to derm he took a little piece off my ear and ran a test and came back psoriasis. He then sent me to rhumetologist who diagnosed me with PsA. So after months of terrible pain he gave me a steroid dose that 8 hours later I was completely pain free. That only lasted a week or two but was much welcomed. Now on methahextrate and doing ok some days not so ok others.
SK, am I to take it that no one labeled anything wrong with your SI x-ray even though there was something apparently wrong with the joint, showing on the x-ray?
Makes you a real believer of doctors at times. (insert loooooong eyeroll.)
I WAS told I have arthritis of the spine. Not what kind. Wear and tear arthritis - osteo? And is the SI joint considered a part of the spine? Feels like it's off to the side of it. If I have arthritis of the spine does that include the SI joint? Now that I think back, my back did bother me before the SI joint went south. Couldn't ever sit comfortably, got horribly stiff and sore, then after a particularly physical job 15 or so years ago, couldn't even bend 1/2 around. Starting to rethink things on my back...
Understand, Petunia, PsA is a preponderance of evidence diagnoses. AS isn't much different. even if there is ankylosis, and most patients with a Dx (or claimed Dx), don't have ankylosis, there is not a clear connection to inflammatory disease. AS in many physicians opinions is a description, a few think its a disease and a few more think its a "condition" And there is still a large body who believe, it doesn't matter whats fusing, unless its the SI its NOT AS
Fibro is another one then went through a big morph first it was a mental condition (hysteria) then a disease, and more recently it is a condition caused by another disease or even improper treatment of another disease,
Oh my, oh my, lamb. And still I have that horrible pain. I guess I can live with the pain if I know it's NOT going to end up as a destroyed joint.
Thank you, yet again, for weighing in. I find your posts very interesting and extremely informative, lamb. I've just been unsure about what to do next after our last discussion where you opined it wasn't PsA but an injury. Which may well be true, fair enough. Just wish I could figure out the rest of the joint pain/fatigue...fibro? Not fibro? Whatever. You know what we go through. (Loops finger around temple.)
Just to get my 2 cents in here for what that is worth....a good pain management doctor, that understands pain, and is willing to treat it, and help you with it is very hard to find, so I would be very reluctant to blow him off, even though I do agree that he probably should have said "i don't know" or "not in my opinion" rather than "no it's not". The reason I say this is that I had to wait over a year to get into the Chronic Pain Clinic here, while my family doctor did her best to manage my long term chronic pain, which was at the time as a result of 3 failed spinal fusion surgeries, she was not a specialist and was struggling to manage it, thus the referral. (run on sentence or what!). Anyway, at least you now know what you have, and can work with the appropriate doctor to treat the underlying disease accordingly with the Rheumatologist, which will hopefully control your pain enough. If not, you may still need the pain doctor, which is why, although you are likely annoyed with him for good reason, I would still keep him around.
Sudden acute and severe pain can be(and usually is) an injury, that doesn't mean it can't be caused by the disease a bad twist ben sleep wrong etc on an inflamed joint can cause all manner of distress to nerves. The swelling can cause that thing DC's call sublexation. It takes years to sort it all out in your body. But after the thirtyfive or so I've been playing with it, I can tell better than any MRI or doc what and where something is. After a while your docs will learn to trust you. I can call now and tell them what I need and they don't even question it. They either fax it or have the office girl carry the script across the hall. I didn't mean to minimize anyones pain (not even in the thread that was closed.) The point is it doesn't MATTER what they call it, if someone will treat it.
Petunia Girl said:
Oh my, oh my, lamb. And still I have that horrible pain. I guess I can live with the pain if I know it's NOT going to end up as a destroyed joint.
Thank you, yet again, for weighing in. I find your posts very interesting and extremely informative, lamb. I've just been unsure about what to do next after our last discussion where you opined it wasn't PsA but an injury. Which may well be true, fair enough. Just wish I could figure out the rest of the joint pain/fatigue...fibro? Not fibro? Whatever. You know what we go through. (Loops finger around temple.)
This is a very good, very valid point. I guess I didn't put much stock into the PM situation because mine never diminished the pain. But Buick Boy's situation with his PM doc may be totally different. Thank you for bringing up this point. And the same goes to lamb as well. It's good to have multiple opinions.
dani7865 said:
Just to get my 2 cents in here for what that is worth....a good pain management doctor, that understands pain, and is willing to treat it, and help you with it is very hard to find, so I would be very reluctant to blow him off, even though I do agree that he probably should have said "i don't know" or "not in my opinion" rather than "no it's not". The reason I say this is that I had to wait over a year to get into the Chronic Pain Clinic here, while my family doctor did her best to manage my long term chronic pain, which was at the time as a result of 3 failed spinal fusion surgeries, she was not a specialist and was struggling to manage it, thus the referral. (run on sentence or what!). Anyway, at least you now know what you have, and can work with the appropriate doctor to treat the underlying disease accordingly with the Rheumatologist, which will hopefully control your pain enough. If not, you may still need the pain doctor, which is why, although you are likely annoyed with him for good reason, I would still keep him around.
Wow Redsfan that is too funny "the spots on my privat guy" until 10 days ago I didn't know you could get psoriasis there. Was kinda wierd to show my wifie what it looked like. I to have a great wife and we both got the giggles as well. Besides, anytime my wife will hear news of a guy or gal being unfaithful she'll ask (jokingly) if I would ever do that. To which I'll reply that one women should be enough for any man ;~)
Redsfan said:
I was given NSAIDs for two months of severe pain that of course did nothing. They then sent me to PM Dr that did same thing and sent me back to internal med Dr to look at my skin spots ( why not dermatologist I don't know). He looked me over said the patches on my head and ears were nothing BUT the spots on my privat guy he thought was syphilis! So yes I had to inform my wife that I had to be tested for syphilis (lucky for me my wife is very different from most spouses) so together we laughed knowing that was not the case. After finally a trip to derm he took a little piece off my ear and ran a test and came back psoriasis. He then sent me to rhumetologist who diagnosed me with PsA. So after months of terrible pain he gave me a steroid dose that 8 hours later I was completely pain free. That only lasted a week or two but was much welcomed. Now on methahextrate and doing ok some days not so ok others.
It amazes me what we all go through to get a diagnosis around here. From my understanding, on average it takes 3-5 years to diagnose PsA. In the meantime, we all suffer with misdiagnoses, unneeded lab tests, x-rays, MRI's, meds, etc. Oh-and don't let me leave out the pain we suffer with. It not only is a knock to our health, but our pocketbooks too. It is also my understanding that aggressive treatment as soon as diagnosis is made is imperative to slow down the degenerative process.
I sympathize greatly with everyone's suffering while the doctors try to figure it all out. I, myself, am on my 3rd rheumatologist. The first one told me I was too young to have arthritis (Ha!). The second one switched my blood sample with another patient's and told me I had Hep B(I didn't find this one funny at all!!) I also made the mistake of messing around with my GP for over a year with an insane amount of blood tests that they couldn't make heads or tails of.
I seriously saw about 7 different doctors before I had a diagnosis. It took almost 3 years, and that was with me being very proactive about finding an answer to all my pain and swelling. There is something really messed up with us having to go through this.
I, like every other person has gone through what you have in some form or another. For me, I suffered with neck, shoulders, lower back, feet, hands and wallet pain. I couldn't take it any more, so I decided to figure it out myself. I self Dx, found a local auto-immune disease support group, told them my story, they told me I was correct and told me to see a Rheumy, saw the Rheumy and she confirmed my Dx.
WOW, you are all singing my song. I STILL cannot get a diagnosis even though I have most of the symptoms. I can't afford to keep going back to these specialists and waiting months in between appointments.
I printed off Lamb's recent list on how to properly diagnois PsA and highlighted LOTS of the page with my exact symptoms, and I am brining it with me to my next pain doctor appointment.
I think I'll have to go back to the dermatologist that originally diagnosed me with psoraisis to get a real diagnosis I am afraid. He saw me with my worst flare ever. (My GP told me it was an allergic reaction to hair dye) when my scalp was actually crusted and bleeding in spots from the psorasis. I never realized how hard this was to get a diagnosis on, when I did the research I figured it out!!!! (scalp psorasis, check. pitted nails, check. family history, check. red, inflammed eye, check. swollen stiff fingers, elbows, check. SI joint pain, DDD, check. Need 30 minutes in the morning to even get moving from the stiffness. it goes on and on and on. And, all I have to help is injections, cortisone for the scalp and eye, and vicodin. AAARRRGGGHHH!!!!
Nothing was ever mentioned until the Rheum ordered the X-rays last summer, he also looked at lt knee, ankle and foot, was first to notice that it was swollen more than the right, even I hadn't noticed, thought the limp was all from the Sciatica.
Petunia Girl said:
SK, am I to take it that no one labeled anything wrong with your SI x-ray even though there was something apparently wrong with the joint, showing on the x-ray?
Makes you a real believer of doctors at times. (insert loooooong eyeroll.)
I WAS told I have arthritis of the spine. Not what kind. Wear and tear arthritis - osteo? And is the SI joint considered a part of the spine? Feels like it's off to the side of it. If I have arthritis of the spine does that include the SI joint? Now that I think back, my back did bother me before the SI joint went south. Couldn't ever sit comfortably, got horribly stiff and sore, then after a particularly physical job 15 or so years ago, couldn't even bend 1/2 around. Starting to rethink things on my back...