After finally finding out I have Psoriasis after 2 and a half years of sero-negative undiagnosed arthritis symptoms, I got an MRI of the two places I have hurt the worst.
The neck wasnt showing much more than a herniated disc. (althouth there were romanus lesions present, alhough not commented in the MRI report.)
But my jaw came back with "bone marrow edema, jagged and uneven joint surface, as in suturs, seen as arthritic changes. No fluid in the joint".
The rheumatologist hung up on the no fluid in the joint part, "there should have been fluid there". I told her I wasnt in bad pain in the jaw when the pictures were done but "there should have been fluid there anyways". She is now taking the pictures to more specialists to have a look at. She seems to suspect its mechanical damage. (I have a 20 year history with jaw problems, grinding etc, but it has been the same up until 2 and a half years ago, only then did it turn much much worse, along with me getting joint pains and stiffness (neck, lower back, hips, jaw)
Why when everything else fits with arthritis is it so hard for he to believe it when she sees it in an MRI?
So sorry for what you are going through! Doctors suck like the rest of us at times. No excuse, but I guess they also don't like to give people negative news? Sometimes we have to spell it out for them & say TELL ME even if it's bad news. I have done that with my own docs & then they usually tell you what you need to hear but what they dread telling you.
We ARE our own best advocates! and sometimes we need to keep pushing people to be straight with us! I have certainly been brushed off by my docs at various times. Once I refuesed point blank to leave my GPs office until he gave me an xray request for my R knee (he said it was "nothing to worry about"" I told him it was- I won-got the xray & guess who was right! Yep me- and yes, damage now to my right knee. What a bunch of pussies doctors are !
Mechanical damage or not- something is going on- you are RIGHT in wanting it investigated thoroughly. Do not take no for an answer- its your health & life - she is merely part of your team. Good luck & let us all know how you go.
And by the way, my understanding is that the fluid that should be in your joints has leaked/haemorrhaged out due to the PSA damage?
Better people than me on this site can advise re that !
Big hug to you, keep pushing, you shouldn’t have to and its a hard road but worth it…wished I’d been more vocal years ago, maybe I would have saved myself a lot of pain and feelings of worthlessness x
So, this is strange…I have psa, my sister was diagnosed with juvenile arthritis, and she had the Same thing in her jaw…she was told that she had TMJ and she went to the specialist and after x-rays was told that she had major joint loss in her jaw, she just had the surgery last month to fix it. Her rheum keeps telling her it was from the JA but her fingers are bad like mine and they can’t figure out if she has any other form of arthritis. She was on numerous different types of arthritis meds for years before they stopped them because they tell her the damage has already been done. They looked her over for psoriasis after I was diagnosed and didn’t find any. I know this doesn’t help much, I just haven’t heard anyone with the same thing as her going on, I really hope they figure something out for you. They gave my sister naproxen and she said it helps tremendously. I wish you the best!
Keep pushing for help. It took years for me to find a doctor that could help me. After I found Dr Cole 7 years ago. Then I struggled with what treatment would help. Each treatment helped for a while then stopped. Now on a study AMG 827 seems to be helping. Good luck.
Your health is your most important issue. If this Rheumy is not treating you you should find someone who will! I went through a menagerie of doctors before I found the right treatment. Sounds to me like this particular dr has a "god" complex. I must be right because i'm the doctor. Bull@#$! You know what is wrong you know something is wrong you need to find the right fit for you as far as dr.s go. Sorry But i am very passionate about this subject as I was poked, medicated prodded very unnecessarily for many years before I found the right doctor that looked at ALL my symptoms together and put me on the right medications. I have my life back now. I would not wait. I would make an appointment with someone else and say look here are ALL of my symptoms. LIST THEM ALL from headache to back ache to skin and internal. List every one! Then list all the medications you have tried, list all the tests and tell them what other doctors have said. Then say I am coming to you for answers I am tired of being given the run around, I want you to fix this and keep working with me until I feel better. Keep trying different things until I feel better. You have be be in charge of your own health my friend and keep squawking louder and louder until you find someone to actually listen to YOU!. Best of luck
Treat your doctor like your plumber, of they can’t get the job done they way you need it, fire them and hire someone else. You can’t sit around waiting with this condition, joint damage gets bad fast!
So, this is strange...I have psa, my sister was diagnosed with juvenile arthritis, and she had the Same thing in her jaw...she was told that she had TMJ and she went to the specialist and after x-rays was told that she had major joint loss in her jaw, she just had the surgery last month to fix it. Her rheum keeps telling her it was from the JA but her fingers are bad like mine and they can't figure out if she has any other form of arthritis. She was on numerous different types of arthritis meds for years before they stopped them because they tell her the damage has already been done. They looked her over for psoriasis after I was diagnosed and didn't find any. I know this doesn't help much, I just haven't heard anyone with the same thing as her going on, I really hope they figure something out for you. They gave my sister naproxen and she said it helps tremendously. I wish you the best!
I have PsA and and went without a diagnosis for nearly a decade. Arthritic pain but nothing showing in the serums tests so doctors ignored it and gave every excuse from my weight to me being more sensitive to pain than other people to i had the wrong diet as a child.Only after we had our daughter 2 years ago did Psoriasis show up until that time I had never had any skin issues at all not even acne as a teenagers nada zip zilch. Suddenly hair loss and rashey scalp and a dermatologist saying you have psoriasis made a lot of things go click. I found an internist who decided to take a look and all along I had been damaging my joints with arthritic flare ups but the diagnosis was missed by the lack of psoriasis now that it is here we can clearly see the problem but there are other cases where people NEVER have any skin issues but do have PsA. I would remind the doctors of this fact for your sisters sake.
something is wrong with my comment im sorry it looks weird my computer hates me this week...
My uncle is a physician and he was telling me that with the confidentiality law came the law that mandates doctors to tell you what you have. No more covering or masking diagnosis anymore. Unfortunately, they not always know what is wrong. We all share rare/not-so-common diseases and present a challenge to most doctors. Being complicated enough to involve different specialties, we do better getting treatment from "Diagnostic Clinics" where all specialties fall under an umbrella and share the same patient file. These clinics, appart from Mayo and Cleveland Clinics, are Universities with Schools of Medicines that may be near you. They take most health plans and do not charge as much as I thought they would. Since they are teaching clinics, they welcome rare diseases as study cases for they students.
I understand about your jaw. I spent a few months once on strained baby food because of my jaw pain. When my doctor received the x-rays, he called the radiologist and screamed, (in his words) "Are you blind???!!! I want another corrected report ASAP!!!" Everyone makes mistakes. Since it happens to be your body, you are in charge of it. Like one doctor once told me, "No one pushes that medicine down your throat but you. Therefore, you are ultimately responsible."
You don't have to answer but would your rheumatologist be Dr. Kelly Cole in Lexington, KY? If so, I saw her when I lived in KY and thought she was wonderful...always listened and tried to help me. She was the one who diagnosed me with PsA. I had only a couple of small patches of psoriasis when I was in my 20's and had totally forgotten about it. I now live in Colorado. The rheumatologist I saw here said he had nothing to offer. He wanted to x-ray my hands and feet because I was having a lot of pain in them. I can't even close my hands. He seemed very put out that I had worn a pair of zip up boots and he had to wait for me to take them off so he could look at my feet. (The weather was cold.) Never made eye contact with me the whole time- was looking at something on the wall over my head. Seemed a little agravated to that I'm a nurse and have medical knowledge and could ask questions and understand the answers. He told me I didn't have PsA. I told him I had already been diagnosed by an outstanding rheumatologist. He said it's just osteo. I said My rheumatologist told me I have that to but that I also have PsA. Needless to say I never went back. My sister also was diagnosed with Psa. She sees someone in Dr. Cole's group and thinks he's ok but plans to switch to Dr. Cole. I can't remember what it's like to have a painfree day. I have not been able to work since Nov. 2011. I would love to go back at least part time. Wishing you the best!
Tammy Whitaker said:
Keep pushing for help. It took years for me to find a doctor that could help me. After I found Dr Cole 7 years ago. Then I struggled with what treatment would help. Each treatment helped for a while then stopped. Now on a study AMG 827 seems to be helping. Good luck.
They had me try NSAIDS. Voltaren, about a year ago, but despite it helping fatigue and lessening pain levels, It absolutely killed my stomach. To the point I stil have problems with it. I also had neuropathy symptoms for the full 6 weeks I was on it and a few months after. (nerve pains in hands, feet, face) No clue if that was connected.
She has prescribed a new NSAID now, that she claims is better for the stomach, but in my country, with no arthritis diagnosis; DMARDS and biologics are not an option. Right now I just wish somone would give me a few steroid tapers to be honest. I am so sick right down to the core of me of feeling this thing attacking my body and having nothing to fight back with.
I know this may sound like splitting hairs but it sort of points to the perception problem of our disease that we all have. "Arthritic Change" has absolutley NOTHING to do with arthritis........It simply means that the joint is not radiographically normal. The lack of fluid eliminates the"itis" which is the inflamation of a joint. The lack of both inflamation and arthritic change on the other joint that was imaged is probably part of your docs confusion. The diagnostic criteria anywhere is a point scale. If you have enough "points" you have the disease, if you don't, you don't There are a number of accepted criteria however. If you don't meet one, you might meet another here are the common ones:
The secret is which one counts. In the US, it pretty easy. If your insurance policy doesn't say which, any can be used. (Except of course medicare and medicaid which DO) I'm sure it varies by country depending on the Health Care system.
I don't know. I know in our area they don't use MRI much at all because of the limitations, including high cost and variable reproduciblity The scale you refer to was adapted from the one used for RA and is in "trial" because the scans showed showed poor reliability for inflammation around the joints especially hands and feet. in many areas My doc when asked about MRI, told me in her opinion it was a crap shoot. pain is often referred because of inflammation so unless you did a whole body scan, a negative was inconclusive. The scoring was fine the test is/was not. It seems every Doc has their favorite "symptom"
There is still (thankfully in my opinion) some resistence to evidence based practice in this country as sadly it has been most used for economic reasons (never its intent)
I know this may sound like splitting hairs but it sort of points to the perception problem of our disease that we all have. "Arthritic Change" has absolutley NOTHING to do with arthritis........It simply means that the joint is not radiographically normal. The lack of fluid eliminates the"itis" which is the inflamation of a joint. The lack of both inflamation and arthritic change on the other joint that was imaged is probably part of your docs confusion. The diagnostic criteria anywhere is a point scale. If you have enough "points" you have the disease, if you don't, you don't There are a number of accepted criteria however. If you don't meet one, you might meet another here are the common ones:
The secret is which one counts. In the US, it pretty easy. If your insurance policy doesn't say which, any can be used. (Except of course medicare and medicaid which DO) I'm sure it varies by country depending on the Health Care system.
But to my understanding, Bone marrow edema, is an actual inflammation of the boney part of the joint. The fluid should be a result of the inflammation, but the inflammation is still present? -I was under the impression that she thought since there was inflammtion within the bone, she expected to see fluid(swelling) in the joint itself due to inflammation.
The other thing that got me puzzled, is that the surface of the bone is described as "jagged". I saw that myself on the pictures. From what I understand mechanical wear and tear would leave a smoother and worn down surface, not a jagged, flatted out one?
Granted, I'm no expert. But the whole thing has me sooooo frustrated. I get absolute killer joint pains out of the blue, they persist for almost 3 years now, and no blood work came up positive. Then they find Psoriasis (wich i never suspected that I, or anyone in my family had) and they find actual damage to a joint I have complained about for soooo long. In addition, my symptoms fit with arthritis, right down to the hallmarks; fatigue, flares, responding to NSAIDS, weather impacts me heavily, etc etc....and they still find it almost impossible to believe I have a form of arthritis....it beats me how they do it.
Bone marrow edema can also be caused by injury, osteoporosis, or menopause. Joint injury can be jagged smooth pitted etc. The intresting thing is your negative blood work..... That's pretty common with PsA.
There are multiple kinds of rheumatism that are not arthritis. In fact more that are than are not...... Its a difficult specialty. If you are getting treatment while answers are being aught you are ahead of many..... I'm not making light. There are now three classes of NSAIDS all that work a bit differently including now some slow release that are absorbed in the colon as oppose to the stomach. Many of us have tried 6 or more before we find one that works "right" Hopefully they will find one for you soon.....