Denial? Second Opinion?

General
1

Hi. I'm a 36 year old stay at home mom (former ICU RN) of three young busy boys. I've always been an active person, gymnastics, dance, cheering etc in high school and college. And even though I don't "exercise" now, I'm at goal weight and remain fairly active playing outside and lifting/chasing the kids. So there's my profile: fairly active (exhausted) mother of 3.

I've battled tendonitis/bursitis at different points in my life. Even as a child, I can remember gymnastics making my wrists ache. I'd say my joints started to "flare up" more regularly around age 22. I had several bouts of bursitis in my shoulders, sometimes so severe I couldn't lift my arms to brush my teeth without excruciating pain. But with anti-inflammatory or pain killers, it would last a few weeks and go away completely.

About 4 years ago I had a pretty bad case of plantar fasciitis while pregnant. Wearing a night splint and stretching controlled that and it went away. I considered all these things normal (although irritating and painful) issues of life. Until one year ago.

One year ago I began having what I thought was another bout of plantar fasciitis. I saw a podiatrist for several months and even had a steroid injection, wore a walking boot, and night splint. Nothing helped. and MRI showed bone marrow swelling, what?! I saw a chiropractor for the "SI joint dysfunction" (per orthopedic surgeon diagnosis, I was convinced my hip was rotting out of its socket). He's treated me for almost a year. Slightly better.

Between the podiatrist and chiropractor I saw a rheumatologist just to make sure we weren't missed an underlying arthritis. All labs (including Lupus, Lyme and RA) were negative all other labs (CBC, Vit D, etc) were normal. Xrays showed mild if any degenerative changes. She agreed we had an SI joint dysfunction on our hands, and started me on Mobic for the pain.

Fast forward 10 months. I can't get off Mobic, or all the above symtpoms come back. I've added neck pain and right index finger pain to the list. (WHO. KNEW. one little finger could hurt so much?) Also my ankles have started throbbing.

Here is my issue with immediately believing I have PSA. I was an ICU nurse for years. In the hospital we treat the numbers and diagnostic tests results. We don't start giving hard-core medication for something we can't back-up with a lab or test. My Xrays show the same changes any former dancer's would show. My SI joints feel the same as most moms toting around a 25 lb baby and lugging around a stroller. There is no overwhelming evidence pushing me towards starting these meds, except the pain.

I asked my Rheumy to please XRay the finger joint, since it's a very new symptom that I've NEVER had before. She said "No, I still think it's PSA and we need to think about treatment." I'm strongly leaning towards demanding an XRay of the finger and if that shows degenerative changes I'M ON BORED. (Dancers don't get arthritis in their fingers, haha) If she won't scan it, I'm going for a second opinion.

Is this making sense, am I in denial or do I need to get a second opinion?....PLEASE HELP! I want to enjoy my young kids and our days together. I didn't become a stay at home mom to be exhausted and in pain, unable to do things I want to for/with them.

Thanks

2

OH in addition I have suffered from SEVERE IBS for 20 years. My orthopedic doctor believes if I have arthritis it's from the inflammatory process of that damage. So I have no idea what to do. I am seeing a doctor to eliminate certain foods starting...today =/

3

Aside from the fact that every single ":symptom" you have including progression is consistent with PsA and that the Negative blood work coupled with a systemic response to Mobic (or any other NSAID) is HOW a seronegative arothopy is diagnosed (PsA is one of several) why does she say its PsA. You need a few other things like family history, Psoriasis, nail changes etc etc. It doesn't really matter though which one it is though.

IF you are looking for radio-graphic evidence, by the time you get it with PsA (or any of the seronegatives,) you are pretty much screwed for life. That damage is irreversible.

You are in the position most would kill for. A doctor who recognizes you have a problem. Chronic Inflammation is not normal it has a cause. So yes I would say you are in denial. She wants to treat it. Now whether this comes out to be PsA or any of 137 other rheumatic diseases (diseases that cause chronic inflammation) it doesn't matter. The mechanism between all of them is pretty much the same. Whether she starts you on a DMARD or is able to move to a Biologic drug because of your age and multiple joint involvement (5 or more) the exact disease doesn't matter

One other thing - the hallmarks of this disease (and most of the seronegatives) are enthesitis (which mimics bursitis and tendonitis) and it will not show up in an x ray an occasionally in an MRI with contrast and STIR sequences. The most ACCURATE diagnoses will come from believe it or not a session with your doc and a measuring tape with you standing against a wall and then bending over. etc etc. Then her little poking around session. We are seeing some use of sonograph in the office.

Good luck and stay with it (and us). It sounds like you have a great Doc.

4

Everything you're describing sounds inflammatory. Early and aggressive treatment for these diseases is important to slow/halt progression. I thank my lucky stars that I was diagnosed so quickly. People can go years without proper diagnosis, and then can experience permanent damage in that time. I was diagnosed at your exact age, with two young children. I'm 42 years old now, and just had surgery last month due to damage caused by PsA. Why mess around?

5

But what did you XRays and labs show at diagnosis?

6

In other words, yes it sounds inflammatory, but if it's caused by the gut (which is what one doc thinks) then why not stop the gut problem? Does that make sense? Just truly trying to make the right decision based on the evidence presented to me by the doc.

7

IBS (as is chrohns) is caused by inflammatory disease (autoimmune) and is directly related tp PsA and treated much the same way. X-ray is rarley used for inflammatory disease diagnoses. We are talking autoimmune disorder NOT osteoarthritis or old age or injury. This disease attacks not only your joints but your organs connective tissue, gut and glandular sysyems.

Nothing you describe is caused by eating spicy food or tomatoes. There is not one SHRED of scientific evidence not one that any of this is caused by the "gut"

8

Maemae, it sounds to me like you hit some kind of jackpot (not). I have PSA (I really, really have it) and my lab work for PSA and RA comes negative and only a little damage shows on the X-rays (I thank the stars for that, we treated on time) . You sound like a PSA textbook. Said that, a second opinion will never hurt. I asked for 4 (#1 : nothing is wrong with you, you do not have arthritis, #2: you may have a little osteo, your markers are negative, #3: you are a hysterical menopausal woman and you have psychosomatic fybro, #4: you have psoriasis, your pain travels all over your body, your shoulders and finger joints are a mess and you are so tired that can sleep 24 hours straight, gee lady, you have PSA, honey, and sometimes the markers don't show on the blood test, no. I agree with tntlamb, you are being hit like a ton of bricks and you could benefit from treatment. I was in denial too, as you I am an active person and I have been working fin the medical field for years, I am not the person on the bed, come on , I am the caregiver!!!!. If the X-ray shows damage, what are you going to do? Nada. What you want on the X rays is joins without damage. With the proper treatment, you will enjoy your life and kids without that pesky fatigue. It is not a garden of roses, when you think you are over it, you flare up. You'll learn how to cope and fight it, this board is being very helpful and caring for me, sharing and venting it is helping me a lot. Namaste.

9

I can't tell each of you how thankful I am I stumbled upon this site. As I told my husband it is like "Facebook for people with PSA". I am truly truly thankful for you reading about my symptoms and helping me.

I just got off the phone with my mother. She had a dermatology apt recently for patches of rash on her elbows. DING DING DING. Been treated for OA for a few years and Y'ALL GET THIS...even with the patches the rheum didn't diagnose her and she's only on Celebrex and Sulfur.

I'm getting online now (while baby #3 asleep) to do some research for her. And certainly giving her this web site. I've learned more here in 48 hours than I did in 2 years of nursing school. LOL

PS: the moral is: obviously I must truly have PSA with this family history.

10

Post editing " you have PSA honey", it was reenacting my 4th and current doctor, I forgot the ) at the end, in no way or form I was diagnosing you! lol ! :D . Your conversation with your mom adds weight to your doctor's diagnosis. Funny enough, my dad has psoriasis too. A couple of years ago, talking to him on the phone (I am Spanish, from Barcelona and my parents are there) I am explaining about my arthritis and he goes, oh yes, that hurts, I had bouts of RA when I was a teenager, so did my father and my brother. And I was like, "and you were to tell me....when????????" I had been trying to get the right diagnosis for 10 years and he never said a word. His answer: "You never asked me about the arthritis or I would have told you" . Geez, dad :D :D

11

Oh I knew what you meant surfer;)

12

Hi Maemae,

It sounds like you had a baby recently. Within the first year postpartum many women have a massive flare of whatever has been percolating in their system. Thinking back, did you have any worse symptoms within the first year of giving birth to each of your other 2 kids? It's pretty common to FINALLY get a diagnosis once the disease explodes postpartum (this isn't just for PsA, but many autoimmune diseases).

ps: you don't WANT to see joint changes or damage on x-rays. By then it is too late. I've had PsA since I was 10, and my labs usually look like a perfectly healthy person's.

13

I can relate to your post Maemae. I want concrete evidence or a single blood test that would say a definite YES I definitely have PSA before commencing any medication. (Interestingly I work in the medical field also, but doing cardiac ultrasound). As there are no definitive blood tests, what I am going to do is get another opinion from a different Rheumy. The first one diagnosed me on history and bloods alone, without any physical exam or xrays. My concern is permanent damage - this I want to avoid at all costs, so it's worth it to get another opinion. The first Rheumy said there would be no permanent damage, and didn't start DMARDS, as he said it's not the joints being damaged but tendons/ligaments that are inflammed. Bit worried about my bulging and sore big toe joint at the moment though :/

14

Maemae, I’m sorry you’re suffering this. (BTW, bone marrow oedema, which doesn’t show on x-rays, really hurts. I have it in my feet.) You are, though, in the most enviable position (looked at from my perspective, of course!). You have a doc who has it figured out and wants to start treatment before you get damage. No harm in a second opinion, in fact I think that’s a good idea, but why wouldn’t you start treatment asap, and then get the second opinion. It takes months for DMARDs or biologics to take effect, so don’t waste time. Early and aggressive, that’s the key to living well and preventing damage.



My first rheumie took the “low and slow” conservative approach. I was worried sick, but felt that I had to trust her. In that 12 months, my hips went from mild damage to needing replacement. It was a waste of a year, and it cost me my hips. Now I’m hoping that my my second opinion rheumie started my biologic soon enough that I will still be able to walk on my feet. (By the way, the four DMARDs that I tried, without much success, had far nastier side effects than my Enbrel, which has no SEs for me.) Aside from damage prevention, the biologic has made me feel wonderful: after twenty years, the fatigue, depression and anxiety have lifted. Don’t you and your kids deserve that?



A state of denial is a very bad place to be with this disease. You can deny, and the disease carries on with its nasty process. Fearing the drugs isn’t such a good place either. I’m not saying that you shouldn’t be scared of the drugs, but I am saying you need to be a lot more scared of the disease.



While I’m here, I do recommend the book listed under “book reviews”. The kindle version is a bargain. If you don’t have a kindle, you can download the software and read it on your pc.



Maemae, strength with this! Stay with us.

15

Respectfully your first Rheumy sounds like an Idiot. The swelling occurs at the entheses. Permanent damage can happen in DAYS. A sausage toe is VERY SERIOUS. Take pictures to document for you next Rheumy.
Jazzy said:

I can relate to your post Maemae. I want concrete evidence or a single blood test that would say a definite YES I definitely have PSA before commencing any medication. (Interestingly I work in the medical field also, but doing cardiac ultrasound). As there are no definitive blood tests, what I am going to do is get another opinion from a different Rheumy. The first one diagnosed me on history and bloods alone, without any physical exam or xrays. My concern is permanent damage - this I want to avoid at all costs, so it's worth it to get another opinion. The first Rheumy said there would be no permanent damage, and didn't start DMARDS, as he said it's not the joints being damaged but tendons/ligaments that are inflammed. Bit worried about my bulging and sore big toe joint at the moment though :/

16

Jazzy, your rheumy said that you had PSA but there would be no permanent damage? I respectfully disagree and whatever he is taking, I want two. If untreated, this thing is going to eat your joints, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3123965/

17

My hips showed no sign of damage three months ago and my new x-rays show mild damage. The pain I have there now is permanent. I have had this disease since I was a kid, and only recently been treated correctly. My psoriasis is severe and has been resistant to most DMARDs. I am currently on two traditional DMARDs and one Biologic. If you wait it will be to late.

Duality of treatment is the best way to get help with the grieving processes. So do what you think is best, but strongly consider the medication.

18

Wow, that's a great way to put it. The "grieving process.". Thanks so much for the support!

mataribot said:

My hips showed no sign of damage three months ago and my new x-rays show mild damage. The pain I have there now is permanent. I have had this disease since I was a kid, and only recently been treated correctly. My psoriasis is severe and has been resistant to most DMARDs. I am currently on two traditional DMARDs and one Biologic. If you wait it will be to late.

Duality of treatment is the best way to get help with the grieving processes. So do what you think is best, but strongly consider the medication.
19

Maemae- I think this question was for me. My labs were absolutely normal, and the rheumy did no imaging at all. She did a thorough exam. I had multiple fingers that were swollen, plus psoriasis on my knees. I was started on just NSAIDs, and when I progressed to more joints and severe fatigue, I had a DMARD added in. A good doctor doesn't depend on just labs. PsA is often seronegative.

Maemae said:

But what did you XRays and labs show at diagnosis?

20

Thank you! It sounds like my doctor is great, just didn't do a great job of explaining things to me. There are two forms of arthritis you cover in nursing school: OA and RA. So I've been having to read on my own, when I needed her to tell me all of the reasons she came to this conclusion.

I do have some minor nail changes she didn't even notice (I don't think). In other words, she's quick and assessed me quick, watched the Mobic work, and made the diagnosis. My mom has arthritis and recently was dx with psoriasis.

Anyway, my "grieving process" included a slow walk tonight digesting everything I'm learning. I'll be seeing her next Thursday to follow up and talk which med is best.

tntlamb said:

Aside from the fact that every single ":symptom" you have including progression is consistent with PsA and that the Negative blood work coupled with a systemic response to Mobic (or any other NSAID) is HOW a seronegative arothopy is diagnosed (PsA is one of several) why does she say its PsA. You need a few other things like family history, Psoriasis, nail changes etc etc. It doesn't really matter though which one it is though.

IF you are looking for radio-graphic evidence, by the time you get it with PsA (or any of the seronegatives,) you are pretty much screwed for life. That damage is irreversible.

You are in the position most would kill for. A doctor who recognizes you have a problem. Chronic Inflammation is not normal it has a cause. So yes I would say you are in denial. She wants to treat it. Now whether this comes out to be PsA or any of 137 other rheumatic diseases (diseases that cause chronic inflammation) it doesn't matter. The mechanism between all of them is pretty much the same. Whether she starts you on a DMARD or is able to move to a Biologic drug because of your age and multiple joint involvement (5 or more) the exact disease doesn't matter

One other thing - the hallmarks of this disease (and most of the seronegatives) are enthesitis (which mimics bursitis and tendonitis) and it will not show up in an x ray an occasionally in an MRI with contrast and STIR sequences. The most ACCURATE diagnoses will come from believe it or not a session with your doc and a measuring tape with you standing against a wall and then bending over. etc etc. Then her little poking around session. We are seeing some use of sonograph in the office.

Good luck and stay with it (and us). It sounds like you have a great Doc.