Preparation for Appointment With Rheumatologist

General
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Too funny! Yes, you are right there: some people have almost no skin symptoms, but raging serious PsA. Conversely, people can be covered with plaque and have only minor aches and pains.

And while we are on the subject of symptom severity: pain is a really bad indicator of disease intensity as well. There are people with severe disease who report only mild or moderate pain. The converse applies too.

Yep, Kutya, it is more of a crap shoot than we like to think. Or as docs like to put it, diagnosis is an art, not a pure science. That said, I’d have been grateful if my PCP had done something like enter my symptoms into google. I would have, but in those days, I believed that doctoring needed to be left to the doctors. Now I research and second guess everything that happens to me. My doctors are just going to have to get over that.

PS love your screen name. Ukrainian or Hungarian?

22

Jen75: Pixie, I’m sorry, that sounds like a really unacceptable experience in this day and age. Can you get to another Rheumy for a different opinion?
Hi Jen. Yes, I also feel the experience with Rheumatologist #3 was unacceptable. And my PCP feels the same. Because I have been diagnosed with Crohn’s/Behcet’s, I met with a Rheumatologist that specializes in vasculitis in 2016—I am waiting for an appointment with her. She was interested, engaged, thorough and approachable. I find her credible which is important right now.

Jen75: Be a difficult patient if you need to.
I outlined my concerns RE: the new Rheumatologist with my PCP and he and concerned. He said he wouldn’t have made the referral had he known what was coming. The takeaway, it seems, is, “Live and learn.”

Sybil: My PsA diagnosis was clinched by one ‘funky’ toenail.
I’ll wait until next week to make a decision RE: follow-up with my Derm.

Sybil: Do you have any swollen joints? I spent a couple of years hobbling around on an increasingly painful and swollen knee.
I DO have swelling in a couple of toes—the new Rheumatologist noted it in his report to my PCP. It doesn’t appear to have played a role in his diagnosis. I continue to experience unrelenting pain and sweating—a miserable state of affairs. The Celebrex isn’t helping and although my PCP has prescribed pain medication, I am concerned about taking it for more than a few days.

Poo-Therapy: I wouldn’t say I’m a ‘difficult’ patient, but I am utterly persistent.
And so you should be, Poo. I struggle when I don’t know the doc—this is something I’m working on. I take comfort in the relationship I have with my PCP and tend to pursue my concerns with him.

Poo-Therapy: I’d ask why didn’t he or she want to exclude nail fungus, why the ignoring of the blood test results etc.
I DID ask about this—he ignored me. (He spoke only with the Resident). This was the most dismissed I’ve ever felt. I could see I wasn’t going to make any headway with him, and ultimately decided to cut my losses. Having said that, if experience a medical crisis in short order, I WILL pursue the matter.
Seenie, I’m sorry that your journey to diagnosis was so difficult. I can’t imagine the suffering you’ve experienced. I would also like to know why doctors are so very reluctant to diagnose PsA. The diagnosis of Crohn’s/Behcet’s was similar. Recognition of the need to endure searing pain until symptoms are undeniable is disheartening.

Kutya, I’m pleased you have a great team of docs onboard. It must eliminate a great deal of stress.
I agree, “Doctors are well paid to do their work. If they don’t do it, dump 'em.” But here’s my question. This Rheum did give me a requisition for x-rays of my back—because I’m in such pain, should I do the x-rays? I DO need help and the film might be useful to the next Rheumatologist. I could arrange for my PCP to be copied? Thoughts?

Katie909, as with Kutya, I am please you have a great team of docs. It must be a relief to be able to focus on getting better.

I would like to thank all of you for your thoughtful and caring responses. You’ve been a beacon of light in the storm and I only hope I can support others as you’ve supported me.

Have a great weekend!

23

Not all doctors are reluctant to diagnose PsA. I just think you saw the wrong one. On every level I just think you saw the wrong one. Please find another to see. And don’t forget any doctor can ask for you to have x-rays too, I don’t think the ones this doctor asked you to have will make a pin of difference as it’s likely he won’t read them or their report properly anyway.

And further if I were in your shoes, I’d make a complaint about this doctor, a serious one. And then walk away and forget about him and get yourself to another one. When I don’t know the doctor, I’m far more assertive. When I do, and more importantly when I rate them, I’m then far more forgiving of even blips in their service to me.

But bottom line is all doctors are there to ‘help’ you even if what they might say, you don’t want to hear to include a lack of diagnosis. But it looks like this one went into battle with you without wanting to ‘help’ you at all. It’s simply inappropriate to ignore you and more importantly utterly unprofessional ignore your questions.

So please get yourself another. Big cyber hugs.

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Hi everyone. I’ve been offline since April and am still ruminating about my horrific appointment with a new rheumatologist.

You may recall that I have Behcet’s disease as well as a rheumatologist-delivered diagnosis of psoriatic arthritis. The diagnosing rheum refused to adjust my treatment to address the symptoms associated with my elevated CRP.

Since I was last online, I have had a sigmoidoscopy and gastroscopy to assess the status of the Behcet’s. Although there is visible inflammation in the stomach (no more Advil for me:frowning_face:), the gastroenterologist does not believe it is the cause of my steadily increasing CRP. I also saw my dermatologist who has biopsied an area that appears looks like inverse psoriasis. I’m currently seeking a new rheumatologist–one that also has experience treating vasculitis. I have lost 15 pounds, feel like I have influenza and the pain in my shoulders, back, buttocks and some fingers and toes is overwhelming. What’s worse is I have lost all faith in the medical profession–even my family physician seems to be disinterested. The problem is that I am likely to be offered my dream job this week and feel it would be unethical to accept the position given my poor health and lack of prospects for recovery.

When I was last ill, I almost died. When the diagnosis was made, I wept because I was sure my medical mystery had been solved and I would never again face the painful process of diagnosis again. What to do? I lack the energy needed to tangle with the health system.

I have become aware of a new hospital-based rheumatologist who is said to enjoy a good medical mystery. Unfortunately, my family physician has not returned my call to obtain the wording in the referral letter necessary for the referral to be accepted.

Honestly, I am so terribly exhausted. Any advice would be greatly appreciated. Have a great evening.

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Hi there, @Pixie
I’m so sorry that you’re worn down and it’s totally understandable, especially given your current situation. It’s okay to take a bit of time to regroup before changing back into battle. :smiley: goodness knows how depressing this all can be… But you’ve at least got a lead, and you aren’t out of options, so that’s good!

I don’t know where you are in the scheme of things, but if you haven’t gotten your referral letter yet, it may be time to make an appointment with your PCP and make the referral letter the sole purpose of the visit. This is what I have done in the past, and will be doing once again next week. For me, the visit is 7 odd euro, I don’t know how much an appointment would cost you, but if you cannot get it done over phone, perhaps the cost of the visit is cheaper than the stress, worry, and frustration you’re feeling now. Plus, being able to stare them down, and maybe crying at them - just a tad - can get you the wording you need.

I don’t know if you got the job offer or not, but if I were you, I’d take the chance. There is absolutely nothing that lights a fire under the doctors in my system than the threat of getting the blame for someone going off work and needing aid of the social system. In general ‘unable to preform work’ ‘unable to function’ are the only things they comprehend. And if it didn’t happen, you can still use the situation to explain how you are not getting adequate treatment, because you should not have to question taking a dream job.

Use whatever leverage you can to get the care you deserve.

Hopefully you can get an appointment with the new rheumatologist asap and that they live up to their reputation!

26

Wise words, this was one of the major factors that finally got me off the prednisone - MTX merry go round, and onto medication that worked (in my case a biologic).

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I am new here and have found it very helpful so far. I have a great deal of sympathy for anyone who does not have a sympathetic Rheumatologist. I have only been diagnosed this year & have been so lucky because my Dr is completely lovely. I am not sure how i would have coped if he had not been. I do not do any preparation but maybe i should. I always come away thinking Dam i should have asked such and such

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Thank you for your encouraging message, @groenlof. I had seen a rheumatologist who specializes in vasculitis more than a year—the idea was that she would become familiar with my case of Behcet’s disease before the next major flare-up. When I became ill, she advised my GP that I needed to see a rheumatologist in the community. I found this disturbing because I have yet to find a non-hospital-based specialist who is willing to modify my regime of medications. In total, I have been at this for more than 18 months. At present, my big toes feel and some joints in my fingers feel broken; and I have pain in my heels, shoulders, elbows and knees.

When I returned to my GP a couple of weeks ago, I learned he had sent a referral to another rheumatologist in the community. He declined the referral, citing my need for a vasculitis specialist. This is the first time I have broken down and cried. I reiterated that I thought I had psoriatic arthritis (along with my extensive family history, psoriasis and a previous diagnosis made by a rheumatologist). He reacted as if he had no knowledge of this—and my despair deepened. He sent the referral to the vasculitis specialist who seems to enjoy a medical mystery—noting the possibility of psoriatic arthritis.

The night before I was scheduled to take my most recent dose of Simponi, I was unable to move my wrists and ankles. My husband said my entire body felt like it was on fire. Two days later, I started my new job. Despite taking powerful pain medications, I was in agony. By the end of my day, the tissues of my feet were so swollen that they overflowed from my shoes. After a week of this, I decided to start a low dose of prednisone. I hope this will tide me over until my October 23, 2018 appointment with the new rheumatologist. I’m trying to hang in there with the new job until this appointment. Given my history with rheumatology, I can’t imagine what I’ll do if I am not offered a new treatment in October.

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Hi Su26. I am pleased you have found a helpful rheumatologist. From what I’ve read here, it seems it is not unusual to experience some challenges with this. I hope you’re PA is under reasonable control.

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Oh Pixie, what a difficult situation! I’m not sure I have much useful info, except to say that the prednisone sounds like a sensible option until you can get some sort of treatment. I really hope things get better for you soon!!

31

Find another rhuemy!! I know they are hard to find, but look until you find one that knows what they are doing.