Another frustrating appointment
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?
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@gcranor you’ve asked a good question and the super simple answer is, you don’t know. I was sick for about 1 year before i was diagnosed. My sister had been recently diagnosed with an AD, but the emergency room doctors weren’t listening. They just wanted to stabilize me and send me home. Ive since learned that they aren’t trained to recognize vague complaints; they learn what to do for gunshot wounds and car accidents. Big difference.
https://www.newswise.com/articles/know-your-familys-autoimmune-quotient-aq-campaign-highlights-national-autoimmune-diseases-awareness-month
This article explains quite well what you can do to become your own advocate. Start by doing an autoimmune disease family history. You want to look at the more familiar AD like diabetes and multiple sclerosis.
https://autoimmune.org/disease-information/
You can get an extensive list at the AARDA website
Let me know what you learn!
Thank you and will update the page when I find out
Too many people and children don't have a "medical home" due to lack of health insurance mostly, this includes children. When they get ill they go to Urgent Care center and Emergency Rooms. As Becky mentioned, ER doctors see critically ill patients and are very good at stabilizing a serious condition and making immediate treatment plans. For less life threatening conditions patients are treated and recommended to see a a community doctor for further work-up. The ER physicians have a lot of knowledge of medicine in general but are pros at saving lives. That's why they refer other less acute conditions to community doctors that have the time to focus on the patient.
@colleenyoung., @becsbuddy, @gingerw, @astaingegerdm, @gcranor, and all...Wow! What great discussions from each of you folks. I applaud each of you for clarifying and simplifying these issues with facts and logic. You know, I spent most of my adult years attempting to work within the community medical system, getting more and more frustrated as the years went along and the illnesses increased and worsened, as each specialty kept any finding or hints secret, not sharing among themselves.
As often happens, not until I was in crisis, hit a brick wall did I see I had to make a really serious change...I called Mayo Clinic Florida, the neurology department, and, through tears and fear and despair, I spoke with the department, the scheduler, and began this fantastic Mayo journey through the last few years. I now am settled, have an excellent team of medical folks who really are a team, who actually share information with each other. Wow. what a concept. I've been screaming for that kind of care for so many years....by the time I got to Mayo, I was filled with frustration, anger, rage that I was getting no answers, bad answers, and passed along.
I am now receiving legitimate diagnoses, after deep sharing with my Mayo doctors the history that brought me to them. It's up to me, as the patient, to take control and do my part. I made the call. I explained and exposed myself to my doctors so they could have all the information needed to use their knowledge to help me. Up to me to take control of my health. Mayo doctors are well trained in teamwork, the Mayo system is special and the patient truly does come first.
I feel now as though I'm part of the team. That someone, many someones have my back. I'm not alone. For the first time in many years, I don't feel alone. That may be part of the healing provided by the Mayo staff and the Mayo system. Their wonderful little secret.
I'm getting over several months of problems, very slowly one tiny step at a time we're finding causes and figuring out the equations. I was referred by one of my doctors to a different department I didn't know existed. Integrated Medicine. I'm getting counseling in nutrition, wellness, mindfulness, I'm getting a monthly massage, weekly acupuncture. My goodness, what healing is coming my way. I'm feeling healing more and more with each appointment.
Mayo Clinic's philosophy is to treat and heal the whole person. The rest of the world can't catch up, but some are trying to develop this attitude. Every time I go on the campus, I'm surrounded by the beauty of nature, the beauty of flowers and vibrant colors, exquisite buildings, and sculpture and art throughout. I begin to feel calm and at peace now as I drive onto the property. It's taken a lot of hard work.
Thank you, Mayo. Thank you my Connect folks. Thank you all for walking with me from the pain and anger and rage to now, with healing and calm and peace. elizabeth
Today I had a frustrating appointment. I was set for a specialized scan to determine function in each of my kidneys. What didn't get communicated to me was that I needed to withhold y normal diuretic today. So, they were not able to do the scan, as it might have been inaccurate. We reset it for next Tuesday, instead.
Was I upset? Well, yes, it is an hour each way to get to the scan site. But, I had also planned other things around it, including another dr visit, so it wasn't a complete loss.
How did I communicate to the gals over the phone? I told them to please contact their manager, to make sure information gets in to the protocol books, so someone else doesn't have the same issue. I told them the next person may not be so nice ;)) They appreciated my attitude. It is my thought that they might recall my name and how I tried to work with them, so the next time it will be a smoother outcome.
Frustration does nothing for me but raise my blood pressure. I am learning that it is fine to express myself without making enemies. You never know when you will need an ally. This can be done in any medical setting.
Ginger
They no, nothing about nerves orthopedic surgeons neurosurgeons. None of them are nerves specialists and you can't see nerves on any imaging. You need to see a nerve specialist and they are hard to find. I know there is one in Nevada and that is that doctor's specialty The orthopedic surgeons and other specialists just look past the nerve conditions because they are not schooled in that specialty. Actually when they go to medical school they just push the nerves aside. They have no idea what's going on. That's why they're just dismissing everything I know because I've been through all of this crap
@mnblue50 I can sense real frustration and anger in the comment you just posted. Have you not found answers to any of your questions? Is there something specific I can help with?