So after being told for almost 15 years that i had PsA (by 2 rhuematologists) Now i’m told i don’t have it by one of them. Nope nothing at all wrong with me. Well that’s not entirely true… All my problems are from 3 bulging discs and degenerative disc disease.
Huh??? So all the times i had problems and it was blamed on the psa what the heck was it then? Low grade fever for well over a month, high sed rate in the blood work and an increased nsaid dosage seem to fix it? Back & hip pain started, high sed rate, positive ANA test… Breast bone and rib pain, high sed rate… Swollen fingers and toes… Bursitis in my hips… All blamed on the psa at various times over the last 15 years. I’m very confused. If i don’t have psa then what is wrong with me? This is the same rhuematologist who gave me the second opinion when i didn’t buy the psa diagnosis way back when this started but apparently she can’t find any of those initial tests. I feel like i’m going crazy.
Sorry… I needed to vent a bit. I’m just so confused.
I hear you. And Im there. I was told for 8 years I have SLE Lupus... and was treated for it.. to now be told that I have PSA. One doctor says Im just depressed and the pain is all in my head, another has me on MTX and Diclofenac. I think I am going crazy. Honestly.. if this pain is all in my head, then why cant my head stop the fatigue and pain?? (never mind all the positive bloodwork and bone scans and whatever else)
However, the one thought that has kept me sane (maybe?) through this was something my dad told me years ago. He was a specialist in Emergency Medicine and on top of his "doctor duties" trained paramedics. He said;
"Sara, Medicine is nothing more than a statistical science. Doctors are not Gods, they are human. And they can only translate the data that they have, analytically, NOT subjectively. You are just as knowledgeable as your doctors, because they can NOT ever know how you feel. You need to assert yourself and not be passive in your care."
I have taken that to heart and I have taken that approach with my three children. Doctors are the support staff of my life, and I try to work with them as best I can to get me in a place where I am comfortable. Sometimes Doctors do have the god-complex, but even that can be worked with.
Don't feel bad, you have every right to be upset. How can she lose the tests? If they are not located in your chart than ask her to go back to the lab sites she used. I have heard of this happening a lot more than you would think. Doctors egos often get in way and just want to think they are smarter than last Doc you saw. Hate that very much myself.
BUT, she was one who you went to for 2nd opinion and backs it up and now cannot locate it in her charts?!! This really sounds either like she is not qualified or her paper work needs some cleaning up. IF you were diagnosed in times of computers it has to be on computer, I would think either at her office or place she stores files etc. I have ruptured disc and you are right, it is not going to cause swollen joints, fingers.
Mine did cause my back and and hips to hurt ...even was result of lot of my neck and shoulder pain and it was just one disc down in my lower back. Great PT finally said from it and how i walked to correct due to pain...my pelvic had was out of placement. He did slowly get it back in and shoulder and neck pain went away. Original back and hip did with my first treatment and diagnosis of the disc....just over years other things happen to it.
But i insist she find your charts...i mean really insist. You might ask to speak to the Office manager and let them know about your case and missing blood tests etc. They might just show up with some pressure from her bosses. IF she is her own boss...and she just is not really searching hard for your tests or has any reasonable explanation why they are not in your chart than you can make complaint with your State Medical Board. Some people just need this little extra push/incentive. But to have you believe this all these years plus it fits with your symptoms, just does not make sense. I really ask her to explain this to you in full detail...you might tape it or bring few people in with you so they can recall all what is said since you are upset as you should be.
I just do not get how this can explain all your symptoms...maybe she is sick???
i am extremely sorry and i think anyone that was told this would be as well. Hopefully you have some great friends to help support you at home or nice partner who can assist you to get to the bottom. More and more i think maybe your Doctor might have some problems going on....just is not logical or adds up.
Good luck, please keep us posted. much love to you,
Listen, I went to Mayo in AZ 6 yrs ago for a full, from scratch, workup to see if anything had been missed in 25 yrs of living with arthritis, psoriasis, severe eye inflammation (which causes me to lose an eye, have one artificial one now), IBS. Doc's conclusion? IT WAS ALL IN MY HEAD. So I said "what about all the various rheumatologists and other specialists I've seen since I was 10 yrs old?" He said he couldn't comment on what made them think there was anything wrong with me. Total B.S. I wish I could have gotten my money back.
So, don't take it too seriously. This doc is obviously both refusing to open his eyes and refusing to acknowledge what other docs have seen.
Have you ever been checked for Lupus? PsA and Lupus react so similarly. PsA is usually symmetric, if it's in one finger/toe it will usually flare in the other eventually, mine was a challenge as it didn't always work like that, they found me interesting. I have PsA, Degenerative Disc disease, IBS, and recently fibromyalgia who really knows which one of these is really causing the problems, inflammation in the body is so damaging and can cause so many things some not-typical. I have learned to go with the flo, Doc's dont' know everything and sometimes our ailments baffle them too, must be this, must be that etc....when it gets really bad, which it does a lot, I go on a 7 day dose pack of prednisone or I get an injection. That seems to always do the trick for me, although sometimes it doesn't and I have to stay on them longer but at least they give me quality of life and I'm not crying through the pain. I have even recently had a flare in my 'pelvic bone' it was the worst pain yet< I could NOT believe it flared there, I couldn't move my legs, back anything without screaming in pain/tears. No one fully understand what we go through with this disease and what other diseases stem from it long term. I wish you well and hope you can find a Doc to correctly take care of you.
Hi Marietta, I find it interesting that you mentioned inflammation in your eye, I have had PsA for 26 yrs now, and in the last year I have found, at times, my right eye feels so much pressure and some pain, it comes and goes like a flare, is this how you started with your eye trouble? it feels so weird and uncomfortable and the pressure is tons
Marietta said:
Listen, I went to Mayo in AZ 6 yrs ago for a full, from scratch, workup to see if anything had been missed in 25 yrs of living with arthritis, psoriasis, severe eye inflammation (which causes me to lose an eye, have one artificial one now), IBS. Doc's conclusion? IT WAS ALL IN MY HEAD. So I said "what about all the various rheumatologists and other specialists I've seen since I was 10 yrs old?" He said he couldn't comment on what made them think there was anything wrong with me. Total B.S. I wish I could have gotten my money back.
So, don't take it too seriously. This doc is obviously both refusing to open his eyes and refusing to acknowledge what other docs have seen.
Well, I don't know about bulging discs (I'm a skeptic on that one) but disc degeneration does start in the upper and lower parts of your spine and cause every bit of the problems you described. (There could be a multitude of reasons for the degeneration) A positive ANA really doesn't mean much of anything by itself and over the age of 35 means less. The same with sed rates etc. They all say something is going on, not much more. With the absence of other evidence such as disc degeneration in studies, positive RA factor, etc etc if there is family history, then PsA is often Dx'd. The thing is, tratment isn't much different one way or the other.
So the big question is what are they going to do for you NOW???
Just make sure you get regular care from an opthamologist (not an optometrist!). My chronic eye inflammation led to glaucoma, which led to vision loss, and eventual degradation of my eye itself. Surgery for the glaucoma didn't help at all. Incidentally, since starting biologics I have been able to have no inflammation for the first time ever since this all started. Even if the biologics don't help my joints and the rest that much, they sure do quiet the eye inflammation.
Leesa415 said:
Hi Marietta, I find it interesting that you mentioned inflammation in your eye, I have had PsA for 26 yrs now, and in the last year I have found, at times, my right eye feels so much pressure and some pain, it comes and goes like a flare, is this how you started with your eye trouble? it feels so weird and uncomfortable and the pressure is tons
I was dx at age 25/26. I also have ITP (autoimmune low platelets). The lupus test (ANA) was only positive once (about age 32 when my back and hips started being an issue). They said it was autoantibodies due to the PsA flare that made it positive. They run the lupus tests periodically on me because of the ITP. It’s just frustrating because at least I had something to blame the pain on… Now what? I know it’s not “normal aches and pains” from aging. I’m 40 and this has been going on since my early 20’s. The plan now is stay on anti-inflammatories for my back and that’s pretty much it.
I’m in Canada so things are a little different. I guess I will see if I can get my records from the original dx… But really what difference will it make now? Specialists are hard to get into here and their word is gold so now I feel like all doctors will look at me like I’m crazy. I’ll probably just do what I always do… grin and bear it and hope it doesn’t get worse.
I am Canadian too. I know specialists are hard to get in to see, but I assure you they are all not the same (at least in my experience..) And their word is NOT gold. Stay strong
Roni said:
I was dx at age 25/26. I also have ITP (autoimmune low platelets). The lupus test (ANA) was only positive once (about age 32 when my back and hips started being an issue). They said it was autoantibodies due to the PsA flare that made it positive. They run the lupus tests periodically on me because of the ITP. It's just frustrating because at least I had something to blame the pain on... Now what? I know it's not "normal aches and pains" from aging. I'm 40 and this has been going on since my early 20's. The plan now is stay on anti-inflammatories for my back and that's pretty much it.
I'm in Canada so things are a little different. I guess I will see if I can get my records from the original dx... But really what difference will it make now? Specialists are hard to get into here and their word is gold so now I feel like all doctors will look at me like I'm crazy. I'll probably just do what I always do... grin and bear it and hope it doesn't get worse.
Degenerative Disc Disease is not a disease at all, It's a description of your discs. (they are getting flat basically not doing their cushioning job. there are all KINDS of causes.
As nasty as the disease sounds, the discs can be fixed, and the surgery is pretty succesful.... In the meantime they may have to do some med changes and find stuff that is more effective on nerve pain...... There are also a lot of other strategies that can help: increased hydration, PT, OT Braces/belts, weight loss, TENS, etc etc.
Degenerative disc disease can also be the result of the spondylitis type of PsA.
They only ran the MRI on my lumbar spine and sacroiliac joints. It showed no inflammation. From that, there are bulging discs at L1-2, L2-3, L3-4 and disc narrowing at L4-5. I understand nerve pressure can be causing the pain in the lower half, but that doesn’t explain the elbows and hands or the recurrent tendinitis I get in the upper half (mostly wrists and elbows but occasionally in my right shoulder). However, maybe there are more discs that are causing problems for the upper half? I don’t have any numbness except for one patch (the size of my palm) at the center of my right outer thigh. That patch has been there for years and is numb-ish (sensation is there but it’s different… less sensitive and doesn’t really feel temperatures).
I always felt lucky that I got a dx so soon after reading how others struggled to figure out what was wrong with them. Now I guess I’m in the same boat. Only thing is with me… I hate doctors and tests. Spent my teens and early 20’s playing guinea pig. Literally had blood tests done at least once a week during both my pregnancies. I’m not doing that again.
I jokingly told my daughter (who is an RN) that maybe I was a hypochondriac and didn’t know it… her reply was that hypochondriacs liked getting tests done and running to doctors so I couldn’t have that. If this pain is “all in my head” then I got one hell of an imagination! I’ll get by… I always do. But I’m not running to doctors over and over again trying to get an answer. It’s not worth it. If it gets bad enough, I’ll go to the ER or take up smoking pot and call it medicinal! LOL
The worst part is i have a swollen gland in my neck that’s been like that for 3 months. I mentioned it to the doctor last month, he prescribed antibiotics (even though nothing hurt) and it didn’t clear it. I’m going to have to go back and am not looking forward to it but know I can’t just ignore it. I really hate doctors!
OK…I’m done being frustrated for today. thanks for listening folks! xoxo
I also have back problems I had surgery for a herniated disc many years ago and I have had a further bulging disc and I have degeneration in several vertabrae.
My Rhuemy is so quick to blame my hip and tail bone pain on to my history of back problems and I have no way of knowing and don't think he does either.
I wonder if my back problems are actually connected or as a result of PsA that was not diagnosed. The trouble with Western medicine is health problems are treated as separate problems for different parts of the body even though they may be connected.
I was told I had Osteo A until I developed sausage toes which only relate to PsA and that clinched my diagnoses. I might still be thinking that I was a big baby about my pain.
Don't give up. Getting that diagnoses is important as the not knowing can be worse. In the beginning the treatment might start off the same but not as PsA progresses, not where I live where I had to fail three treatments first before certain meds could be prescribed.
Sometimes we have to perservere until we are convinced we have the right answers. You could try talking to your general practice doctor and if that doesn't work find another GP as they should also be able to get your blood test results and even old ones should be on file.
I know how hard this can be and I have felt like giving up on doctors many times. I also know that this is not in our best interests and we do need to be under medical supervision.
Treat your doctors like your Motor Mechanic who is responsible to make sure your car runs well otherwise you take it back and complain or find someone esle who will do a better job. A good one will show you and explain why something needs attention and make sound recommendations.
Think about getting your neck checked again as it might be something other than a swollen gland or at least find out what is causing it to be swollen and this could be an opportunity to another doctor.
I do hope you can sort this out and don't give up trying to find the answers.
I AM SO SORRY THIS IS HAPPENING TO YOU AND HAS HAPPENED TO OTHER PEOPLE IN THE DISCUSSION, BUT I AM ALSO GLAD THAT YOU POSTED THIS . I WAS MEANT TO READ THIS. I HAD BEEN DIAGNOSED WITH LUPUS, PSA, ABOUT 7 YEARS AGO. I WENT TO A NEW RHEUMY JUNE 1 OF LAST YEAR AND WAS TOLD THAT I HAD NEITHER, AGAIN THAT MAYBE IT WAS DUE TO THE STRESSFUL SITUATION I LIVED IN; I RAISE A DISABLED CHILD. , WHAT? I WAS SO UPSET. IT HAS CAUSED ME TO NOT ASK FOR HELP. , SUFFER WITH PAIN AND FEVERS, AND NOT BEING ABLE TO WALK AT TIMES. I WAS APPROVED FOR SSD AFTER MY DIAGNOSIS ON THE FIRST TRY. WHAT? I WAS APROVED BECAUSE THEIR IS EVIDENCE. TESTS, FOLLOWING ME FOR YEARS.ETC. YOU KNOW THE DEAL. I HAVE SUFFERRED JUST LIKE ALL OF YOU, AND THE LAST FEW MONTHS IN SILENCE , BECAUSE THAT STUPID DOCTOR MADE ME FEEL LIKE A MENTAL PATIENT. I FEEL EMPOWERED AFTER READING YOUR POST. I AM WITH EVERYONE ELSE..... JUST PRETEND YOU NEVER WENT TO THAT APPT. AND STAY TRUE TO WHAT YOU BELIEVE. BEST OF LUCK TO YOU , AND THANKYOU FOR HELPING ME AND COUNTLESS OTHERS.
I saw your post yesterday and been considering this all day off and on. It just does make sense that out of the blue on a regular visit it appears she would say, Okay for last 15 years I was wrong and it is just all from your back issues! Than she cannot even locate your lab work? So how could she make informed diagnoses with out your lab work over all these years?
Something does not make sense and maybe it is your Doctor! They are human after all just like us so get sick just like us.
She might have something going on that has either not yet be diagnosed or you as patient were not told she has something. If there are other doctors in her group than most likely there is office manager who you might speak with or if your GP is in same group...or even not you might go to them and ask about this. If you know where you labs were sent out too than call them and ask for copies of all your lab work as far back as they can go, hopefully to full 15 years so you have proof...though you do not need it, why else would a Rheum doctor continue to see you if it had just been back issues?
That brings a really good point another person told me he does ...which is he keeps copies of all his lab work and results.
You might just journal about all this for couple reasons to help you realize that you are not crazy but also to see if at all in any such way how could she treat you for PSA ...all your symptoms, tests etc....than out of blue say oh btw you do not have PSA!! I find keeping a journal is great way to really get to heart of problems. It narrows it down to very specific issue.
It would be one thing if it was few years but 15! Does she even want to see you any more?
i am very sorry this has happen it really does sound a bit wacky to me. I have had herniated disc in my lower back since my early 20's. Yes, my left shoulder and arm would hurt, my little finger go numb....but how it hurt was not like arthritis pain.
I hope by now you do not feel you are crazy anymore.....and hopefully someone can help you get to the bottom of this, be it her, or your GP maybe another Rheum. But no way can she just treat you than one day say ops! it was your back all along and i don't have the lab work to back it up! That is crazy making on her part not yours! i am so sorry that you just have to deal with this. Keep us posted if you do not mind.
Well as I mentioned, I’m in Canada. She is at a clinic in the hospital (so technically the hospital lost my records). She only continuously sees people who are in really bad shape. You get referred, they do the dx and then send their recommendations to your family doctor for treatment. So I haven’t seen her since I was dx. I’ve been fine on anti-inflammatories since (and I say that loosely!). Doctor has tweaked them, switched them and increased dosages whenever there was a problem and that seemed to work. It was a 10 month wait to get in to see her. We only have 2 rhuematologists. I was referred because my knee swelled up and the anti-inflamatories weren’t cutting it, I was on the highest dose my family doctor was comfortable prescribing so he thought i should be put on a dmard. During the wait (about 2 month into it) the knee got better. So nothing (other than my back) was bothering me at the time of the appointment. All the imaging tests she did focused on my lower back.
I also just wanted to say, compared to some of you I’m doing fairly well. I have the occasional couple of days where the joint pain is bad (maybe once a month or so).
Mostly it’s my tendons that are a problem… which as most of you know, is annoying but resting whatever is acting up takes it down to a dull ache. Using the affected joint is the only time it’s really painful. Luckily, even though this is very persistent and moves around, each individual problem only lasts a few days to a week (ie: ankle tendon causes me to limp a couple days, moves to wrist, can’t do anything weight bearing with that hand for a couple of days, and on and on).
After seeing and hearing what others have going on… I would classify myself as a mild case (moderate maybe during the really painful couple of days a month). I look back at those “bad days” and to be honest the bulk of them have been back/hip/leg issues. Not always though (the last bad time was an elbow that had me in tears for 2 days, it started aching after carrying bags while xmas shopping, then progressively got worse).
I know I’m not crazy and have no doubt that I have PsA (or perhaps even mild SLE). Luckily, in the majority of cases both are a non-erosive form of inflammatory arthritis. I think I fall into the category. The rheumy wants me to stay on anti-inflamatories for my back (so treatment would be the exact same either way right?). I think I pinned my hopes on a DMARD that may of gotten rid of all of the pain. Too much to hope for I guess! LOL
I’m not going to stress over it anymore. I don’t need a label. I know I’m not crazy. I know the pain I have is not “normal”. I mean if every single person felt pain almost equivalent to that of the doctors flipping the baby during natural labor (that’s my 10 on the pain scale and my bad couple of days are probably an 8 or 9) I’m sure someone other than me would be complaining. OK, that sounds bad. I would say the pain was more like a 6-7 the bulk of the couple of days but peaks at 8-9.
I think it’s the “no break, can’t get away from it” aspect of it that makes it so bad. There is no ebb & flow, no comfortable position (at least for more than a minute), no escaping except in sleep (if you can manage that). Just that constant throbbing, hot ache. But luckily for me, those days are few and far between and in Canada you can get Tylenol 1 over the counter. LOL
I’m sorry you are going through a rough time with your rhuematologist Pamela. My work situation is good because I work from home for my husband. When my back started being an issue the doctor put me off of work (I wasn’t able to stand upright at all). After being back to work for about a year (shift work which was killing me slowly! LOL) I was having a hard time so hubby and I decided that I should go on his payroll and quit my job (I was already doing the work for him anyways… So was averaging about 60 hours a week sitting at a desk).
I wish everyone had the opportunity to work from home… It makes dealing with stiff mornings and bad days so much less stressful.