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Thread: Question for those of you who have had a rheumy appointment

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    Default Question for those of you who have had a rheumy appointment

    I was diagnosed 3 months ago and have my first rheumy appointment-they have told me to bring shorts and a tshirt and to expect to be 4 hours. Is that normal. Heck I have had first dates that lasted less time than that.

    Let me know your experience (and yes I have written down everything that I can remember about my health)

    Lucie

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    I think every Rheumy is a little different - but 4 hours - holy cow! Sounds like you will have lots of testing done and you will get your money's-worth - that's great! Not fun, but good baseline information to have.

    When I was diagnosed, they did a lot of testing - took a ton of blood, urine, did a couple of different kinds of scans of my brain and neck, one of my lungs, x-rayed my lower back, did an ultrasound on my hands, did a bunch of pulmonary tests - I forget what else. I'm sure that the tests they order depend on what your symptoms are and also your medical history.

    Bringing a diary of stuff definitely helps!

    Best of luck...

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Well, at least he didn't tell you to bring a crash helmet and hip waders-then you'd really be in trouble!

    Seriously, I've had the same request made of me by my neurologist when I had a bunch of nerve conduction/ evoked potentials tests done that required access to my arms and legs, and I was told it would take "a few hours", which it did.

    But I've never heard of a rheumo asking for these things and taking this amount of time. You're lucky to get even 15 minutes with most rheumo's so I would take this as a good sign that you have a thorough specialist willing to take more time than most to get the good baseline information Sleepy mentioned.

    I don't think any of this is a bad thing. Good luck, and let us know how it goes.

    Rob
    Last edited by rob; 01-16-2013 at 05:38 PM.

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    As much as I can't stand my rheum, she is one of the best in the area at what she does, which is treat lupus lol she runs the lupus clinic at my hospital. She always makes me put on hospital paper shorts when I come instead of wearing them in because her office is too cold. They are probably requesting that because they want to see if you have any rashes, and its easier to move your knees, elbows, and hips to test their mobility if they aren't confined in tight clothing. I get stuck at my appointments that long all the time! Hope your appointment goes well.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, Interstitial Lung Disease, GERD, Myositis, Vasculitis, Fibromyalgia, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 60mg Nifedipine, Nitroglycerin Patch, 20mg Prilosec, Trazadone, 8mg Medrol, 81mg Asprin.

    My old profile on here http://forum.wehavelupus.com/member.php?22042-ritzbit

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    YEa I have never been told a dress code requirement, though like the first year when I would see her I had to wait like 4 hours just to see her for like 15 minutes.

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    My first couple of rhuemy appointments lasted less than 15 min (and each after lasted about 5). When I finally got one I thought was good it lasted about 1:45 min. I am IMPRESSED with a 4 hour appointment! Looks like someone is really taking this seriously and going to check you out from top to bottom! Good luck and keep us posted!
    Mari

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    Was yesterday ever a disappointment-45 minutes with the nurse flushing out the details of my "story"-then a three hour wait to see Dr. Cocky for 15 minutes. Oh it does not present as a classic Lupus case-I think it's neuropathy-I want you to see a nerve dr. but stay on the plaquenil and the naproxen-oh and have your tried xyz for the neuropathy. More F'pills-then 17 vials of blood for the rheumy a urine test and a bill for $150 (I am in Canada) for blood work. Then xrays of the hands and the feet. Then on to the family Dr because I have an ear infection. I AM DONE. I have lived in pain for over a year and no one can tell me why. I do not do Dr I do not do sick-I am not a professional patient.

    I wonder why I was given this to bear because-I am not strong enough. I want to stop-There is simply nothing that I can see in the future that necessitates going to see yet another Dr who will push more pills at me and claim-that I am going to live to 74 years old on average. Why-so I can suffer for another 23 years. Thanks but no thanks. Thank you for listening to me vent-I guess I hoped against hope that I would have found some answers yesterday.

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    :-(

    I'm so sorry it was disappointing - and such a long wait! My eye doctor is like that - it drives me NUTS. But she's a good eye doctor, so I put up with it.

    What you are describing is really frustrating, but not unusual - getting diagnosed sometimes takes a year or more - sometimes a lot more. And it's usually a process of ruling things out, rather than getting some definitive answer at any point. It is REALLY frustrating spending so much time in doctors' offices - I am grateful that modern medicine exists, but MAN do I HATE spending time in doctors' offices, labs, and hospitals. It is very, very frustrating - particularly when each visit seems to just lead to more questions.

    But really - the BAD thing is when you hit a dead end and they STOP asking questions and doing labs and making appointments - then you're just STUCK.

    If I read your message correctly, he didn't say it WASN'T Lupus, just that it is not presenting in a typical way (mine doesn't either) and he wants to go through a Nerve Doc and rule out some more stuff. I went through an awful lot of that, too - saw a Neurologist, got all kinds of scans - saw a Pulmonologist (THAT was complicated), etc. It was mostly to rule things out - things like MS, COPD, Rheumatoid Arthritis, etc. That is not an unreasonable course of action, since the drugs (beyond Plaquenil) that they use to treat Lupus are pretty serious drugs that compromise your immune system, and could be quite dangerous to give to somebody unless you are pretty darn sure they are the exact correct drugs for the patient - and if you're not a "textbook case", that process can take longer and be more complicated than for most patients. Maybe your Rheum feels like it would be irresponsible to treat you more aggressively until some of those questions are answered. Doctors are often not the best communicators, unfortunately.

    You sound really pretty depressed about this - which is also totally normal, of course - being sick all the time and getting no answers is a horrible state to live in. Also, Lupus itself (and particularly CNS manifestations) can mess with your brain and cause depression. Please, PLEASE call your Rheum, or your family doc, or the Nerve doc, and let them know how depressed and frustrated you are - that continuing life they way it is right now is simply not an option - that while they look for answers, you need SOME kind of relief from the pain you are experiencing every day. That may be pain relievers, it may be something like Cymbalta or another antidepressant, I have no idea - but there ARE things they can do - sometimes you just have to press them to understand how desperate you are for help.

    Many people also find it useful to consult with a Chronic Disease councilor to learn some management strategies for all the endless medical stuff we go through, and the emotional roller-coaster we ride as we get answers, or fail to get answers, or get answers that feel really tough to live with.

    In any case - I am sure most of us here can relate to your frustration at this point. Don't give up....come here, vent, ask questions, and dig back in. You're worth it!

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    I've done those "all day shindigs" multiple times, and the waiting for that long is waiting on the lab work to come back. The doc wants all the info he can get before talking with you. I've spent more than a few hours in similar fashion, and seemingly got nowhere, so I know where you're coming from. I don't know exactly your situation, but I do know that it is stressful. We'll be pulling for you, and ready to listen to any and all comments you have. Like Sleepy says, it might be time to consider some further help. See who your pcp can direct you to. Mine sent me to a pain management specialist (which I was *very* doubtful of getting help from), and after a couple of visits, I'd learned some relaxation techniques, changed my exercise routine, and started taking sertaline, all of which has helped. I sleep somewhat better (not great, but better, usually). I've still got constant pain, and we're trying to chase down what's been going on additionally in me for the last 8 months now. I've been going down this road for over 22 years now, most of the time with that "I don't know what you have" diagnosis, getting it called SLE about 3 years ago by my hematologist, but no rheumy would say it until I went to another new one last year. We'll be praying for you and yours.

    btw, do you have family and/or friends who can help? I almost have to take my wife with me to appointments, since I'm getting so forgetful anymore.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    Thanks all-I am on Pristiq for anxiety and Naproxen for pain as well as tylenol extra strength. I know they are trying to find the answers, but to me who is a typical type A personality-it is frustrating. And I hate taking pills-with the ear infection I am up to 23 pills a day. I swear I rattle every morning .

    I just want to "know" what this is-whatever it is, it is-then we can get whatever undercontrol and make plans. The control freak in me hates not being in control, and patience is not something I was gifted with and it is hard to learn at 51 years old. My husband and family have been wonderful-but I am feeling like a drag and joy suck-heck I am tired of me-how can they not be.

    I think because I had accepted the initial Lupus diagnosis-I was just so upset about being thrown into the abyss of not knowing again. Whatever it is, it is-but I would just like to "know". Anyway thanks for listening and giving me some perspective.

    Lucie

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