Another frustrating appointment

Posted by ske22 @ske22, Mar 16 4:50pm

I finally was able to get in to see a rheumatologist. She did a course of labs, and today called to go over the results.

She said that one of the labs she used to test for possible autoimmune conditions was showing a little low, and two others were normal. She said since she didn’t really see anything in my labs, there isn’t anything else she can do for me. She said that my body must be taking care of itself if nothing is showing in my labs.

She asked me more questions again about any rashes, which I told her I do get. I had previously told her all about my symptoms in our last appointment, but I don’t think she recorded any of it because she didn’t seem to have any familiarity with them. And even though I’ve mentioned several times that I have kept good records and photographs, she didn’t want to see them either last time or this time.

I also asked her about the possibility of Still’s Disease based on a previous recommendation, but she seemed very dismissive of the idea and just wanted to know where I had heard that suggestion. She asked about any fevers when I mentioned the Still’s Disease, but then moved on.

I told her I understood that nothing was showing in the labs, but that I was having symptoms still and I needed to know what we could do to address that issue, regardless of an official diagnosis or not. The response was “tell me what you are expecting from me and I will see if I can do it for you.” I didn’t even know how to answer that-I’m expecting help?

I finally asked about possibly doing some imaging of the joints I’ve been having chronic pain in, and she at least said sure we can do that. But it seems odd that I am the one to bring that up? She wasn’t even going to schedule any further follow up or anything with me until I asked about the imaging.

Maybe I’m just being sensitive from the constant frustration of not having answers, but I didn’t feel like that appointment went very well. Maybe you guys could give me some other perspective/opinions/suggestions?

@ske22 I am sorry to you had such a negative experience. When you aren't feeling good, and feel your treatment was not adequate, you feel left behind. Are you with an HMO or PPO plan for insurance? If you are near a Mayo Clinic campus, can you get there or to a large teaching hospital? You may have to end up going to another rheumatologist. Take a few minutes to write down what it was about her demeanor that disappointed you, how her seeming dismissal of your symptom made you feel. This way you will be ready next time. Do you have copies of all test results to have with you and review with another dr? Your primary care dr may sympathize with you and guide you further.
Ginger

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Sounds like you need to find another Rheumatologist. Where are you located — city & state. Maybe the community can help you find another doctor.

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@ske22 I can only imagine how frustrated you are right now. There is no plan regarding next steps and you are left empty handed, no diagnosis.

I do not have medical training but my understanding is that autoimmune disease can be extremely hard to diagnose, if that is indeed what you have.

I agree with @gingerw, if you are able you may want to go to a larger hospital system. I'm not keen about the way your provider's bedside manner. It sounds like your provider is out of options as far as what she can offer. She should have just told you that and suggested that you seek someone that has more expertise.

Would you consider asking for a referral to a rheumatologist with more resources at their disposal?

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@ske22 I'm casting a wide net in hopes that members and mentors will be able to offer you support as suggestions, as @gingerw already has.

I'd like to invite members @astaingegerdm @rashida @becsbuddy @kb1942 @2011panc @goodfriends @Erinmfs @tlgold @oldkarl @caseygirlx0xmv @stsopoci @gman007 @thuts6818 @fourof5zs @lily2013 @basslakeview @hotfooted to the conversation.

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@ske22 – I would be fuming mad after the kind of visit you had! Similar happened to me- my local gastroenterologist pretty much gave up on me and even ridiculed me.
Since we are living close enough to Mayo in Jacksonville I got a appointment there. It was frustrating too -over a few years -before I had a diagnosis of some autoimmune disease.
I was always met with kindness and interest- all tests were explained in detail.
Autoimmune diseases are sneaky in my opinion- they come and go, which is reflected in the way you feel.
I have to admit that my Mayo doctor also felt stressed when I came! However, there finally was a diagnosis- treatable.
As long as I felt sick 24/7/365 I kept going back for answers. You can’t give up. Just remember that your immune system is fussy and won’t always show what’s going on.

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@astaingegerdm

@ske22 – I would be fuming mad after the kind of visit you had! Similar happened to me- my local gastroenterologist pretty much gave up on me and even ridiculed me.
Since we are living close enough to Mayo in Jacksonville I got a appointment there. It was frustrating too -over a few years -before I had a diagnosis of some autoimmune disease.
I was always met with kindness and interest- all tests were explained in detail.
Autoimmune diseases are sneaky in my opinion- they come and go, which is reflected in the way you feel.
I have to admit that my Mayo doctor also felt stressed when I came! However, there finally was a diagnosis- treatable.
As long as I felt sick 24/7/365 I kept going back for answers. You can’t give up. Just remember that your immune system is fussy and won’t always show what’s going on.

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I have the same problems but threefold. Have been told I have three autoimmune diseases. (I will take the first medal). Pain galore. Still hanging on. Sometimes I have been treated pretty badly as well. If it is not in the workers disposition I think they get as frustrated as we do. It is a painful way of life but again, the will to live is intense. Love to all of us, Peach.

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@ske22 Gosh, your experience with Mayo sounds a lot like mine. First, i went to the local clinic company. It is really just a group of small hospitals and clinics which really functions as a setup of first-aid stations with part-time workers who did manage to get through the 8th grade. I have fought with genetic issues since birth 81 years ago. I get nothing from them except for the old pooh-pooh. So I went again to Mayo to get help, and they aid "We can't help you because it costs $7000 to test you." So I went to other places who charged less, and their data is so screwed up with errors such as which chromosome is this gene in? One , (GSN) is listed in Chr 1,3,6,11,14.) OMIM lists it as in 3,9. But I am still looking to get a whole set sequencing, but am afraid of wasting my money, and the tax-payer's money, on another fruitless chase. So I begin to focus mostly on National Institutes of Health (NIH), especially on OMIM.org, ENSEMBL. I do not want to do it this way, but I have no choice, I suppose. I went back through my medical reports, located various suggested diagnoses, and looked them up to see if they fit in any way. Some do, some don't. I now have a list of 48,000 genes and syndromes, including about 200 that are doing damage in me and my bloodline. Then I can say, if someone suggests that I have DCWHKTA (Dilated Cardiomyopathy with Wooly Hair) I can say "yes, I have the gene for that! What do we do about it?" Some of these are killing me, and making life miserable, but I can do little about them: FKTN, GSN, ACH, DC, ACTA1, POMGNT1. On the plus side, I just know that if I flirt with a pretty one, and her jealous husband shoots me, I won't be out much.

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@ske22 Oh, how frustrating for you! I went thru a lot of similar experiences: pats on the head, don’t worry, you’ll be fine, quit watching politics on TV. Too much. Are your experiences at the local level, or are you going to a university medical center? Large medical centers are best. I finally ended up at the University of Colorado med center and have gotten good care.
I have included the link to a discussion I start a while ago. It is information from the American Autoimmune Related Diseases Association, and talks about getting a proper diagnosis.
https://connect.mayoclinic.org/discussion/tips-for-getting-a-proper-diagnosis-of-an-autoimmune-disease/
Will you keep us informed so we can continue helping you?

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@erikas

@ske22 I'm casting a wide net in hopes that members and mentors will be able to offer you support as suggestions, as @gingerw already has.

I'd like to invite members @astaingegerdm @rashida @becsbuddy @kb1942 @2011panc @goodfriends @Erinmfs @tlgold @oldkarl @caseygirlx0xmv @stsopoci @gman007 @thuts6818 @fourof5zs @lily2013 @basslakeview @hotfooted to the conversation.

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@erikas, @ske22 I am in Canada and our healthcare system is different. One can only be referred to a specialist at the discretion of one’s primary care physician. One time I was referred to a really arrogant specialist with whom I felt as frustrated as you do with your rheumatologist so I went back to my physician and asked her to get me another specialist who had a better bedside manner and she did. Perhaps you could ask your primary physician to refer you to another rheumatologist who is more communicative? I always ask for someone who makes eye contact when speaking to me, too.

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I really appreciate everyone taking the time to answer! It helps me not get so discouraged. I am looking into getting in with a different rheumatologist with a second opinion, and I also am not too far from the Mayo Clinic, so I’m looking into getting an appointment there as well. I will continue updating!

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@becsbuddy

@ske22 Oh, how frustrating for you! I went thru a lot of similar experiences: pats on the head, don’t worry, you’ll be fine, quit watching politics on TV. Too much. Are your experiences at the local level, or are you going to a university medical center? Large medical centers are best. I finally ended up at the University of Colorado med center and have gotten good care.
I have included the link to a discussion I start a while ago. It is information from the American Autoimmune Related Diseases Association, and talks about getting a proper diagnosis.
https://connect.mayoclinic.org/discussion/tips-for-getting-a-proper-diagnosis-of-an-autoimmune-disease/
Will you keep us informed so we can continue helping you?

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I have only been at the small local level, and I think I’m ready to try to reach out to a larger university medical center or Mayo. Thank you for the suggestion!

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@fighter

Sounds like you need to find another Rheumatologist. Where are you located — city & state. Maybe the community can help you find another doctor.

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I’m in Fresno, CA. 🙂

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