The Mayo Clinic Diaries: Part 3 Days 1-4
Welcome to part 3 of “The Mayo Clinic Diaries” series, a collection of 7 posts documenting my time at the Mayo Clinic. The idea is to share my experience with others who might be considering Mayo as a part of their medical journey. All the thoughts and feelings I’ve expressed were in real-time, straight from the heart. I even named the physicians I interacted with and shared my thoughts on their approach, in the hopes that it would help you make a more informed decision on whether to see them or not.
Just to be clear and cover myself here haha, what I’ve shared is my own experience, and it doesn’t mean that it will be the same for you. Hearing from others who’ve been in similar situations has helped me and I hope that by sharing my experience, it might help you in some way.
Here you’ll find all the posts linked so you can read through the series 🙂
The Mayo Clinic Diaries Part 1: Application & Acceptance
The Mayo Clinic Diaries Part 2: Travel & Lodging
The Mayo Clinic Diaries Part 3: Days 1-4
The Mayo Clinic Diaries Part 4: Days 5-9
The Mayo Clinic Diaries Part 5: Days 9-13
Day 1
APPOINTMENT WITH DR. MCKEON
NEURO-IMMUNOLOGIST
SPECIALIZING IN DIAGNOSING SERONEGATIVE NEUROLOGICAL AUTOIMMUNE DISEASES
- He is super kind and open-minded!
- He said to be prepared with the possibility of leaving with no diagnosis which was difficult to hear. He acknowledged that my case is out of the box even for him. He said Neurology can only test sympathetic and parasympathetic nervous systems and that mine seems to be manifesting in the enteric nervous system. GI is the only one that can test the enteric nervous system so they will work closely together to try and put the pieces together.
- He says he has seen just a few cases like mine before and has an idea of what to test for which is encouraging.
- We are going to do a battery of tests such as redoing autonomic testing, blood panels and others.
- Overall: feeling hopeful and heard 🙂
APPOINTMENT WITH DR. FOX
GASTROENTEROLOGIST
SPECIALIZING IN AUTOIMMUNE GI DYSMOTILITY
- She is nice-ish but doesn’t seem to listen well.
- She didn’t let me finish explaining anything and would jump to conclusions.
- I am already leaving in tears because she questions and wants to redo every test I have ever done without reviewing any of my previous tests. This is the kind of medical trauma trigger that is going to make Mayo really hard. It’s their job to redo what they feel needs to be done, but when they accuse you of not being that sick, it is really hard and takes you back to all the years of doctors not believing you. It’s crazy that even with positive test results they can act like you are faking. Like you want this. I thought Mayo doctors would be better.
- Not a good feeling about her.
- Overall: sad, overwhelmed, feeling frustrated, unheard and really discouraged.
Day 2
INSURANCE HOLD UP
We had a million issues with insurance, and instead of testing and seeing more specialists, we’re spending the day working on getting this all straightened out and hoping for better tomorrow.
Day 3
THERMOREGULATORY SWEAT TEST
AUTONOMIC TESTING FOR SMALL FIBER NEUROPATHY
- This was an *experience* haha
- They basically have you strip down and pour this colored powder on your body and then put you into a super heated up box – kind of like a sauna that you lay down in. Then as you sweat the powder color changes to purple to help show where you are and aren’t sweating.
- Heat is difficult for me due to my POTS so I took it really slow getting up and utilized the wheelchair after just for safe measure.
- They have a shower there that you can use right after which is really nice so you don’t have to walk around like that the rest of the day.
- Bring an extra towel for sure because your hair will be wet if you decide to wash that too.
VARIOUS BLOOD TESTS
DOING ANOTHER PARANEOPLASTIC PANEL AS WELL AS TESTING FOR VARIOUS RARE DISEASES THAT HAVE KNOWN ANTIBODIES
- We did so many tests today – trying to rule in or out different possibilities.
- We are primarily doing paraneoplastic panels and tests for other rare conditions that only can be run through Mayo Clinic labs.
- We should get the results by the end of the weekend, if not sooner, so here’s hoping they don’t show anything… or maybe that they do? I’m not sure what to hope for anymore – just an answer that we can do something about I guess.
GI TESTING
MANOMETRY
- Yeah…this was AWFUL. Basically, we were testing to see the movement of the GI tract. I already did this with the SmartPill, but they wanted to do this test too.
- Very invasive testing – yeah, we will just leave it at that.
MORE INSURANCE ISSUES
THE REST OF THE DAY SPENT TRYING TO SORT OUT INSURANCE AS THEY ARE SAYING THEY WON’T COVER MY TESTS
Day 4
AUTONOMIC REFLEX SCREEN
TTT, QSART & CARDIOVASCULAR
- Honestly, this was much less thorough than when Stanford did it. There were two techs that did the test and I wasn’t even strapped in to the tilt table!
- At Stanford, the head of the autonomic clinic and another autonomic neurologist tested me in various ways for a duration of 25 minutes where I was tilted throughout the whole exam.
- Something to think about because I know plenty of young women who make the trek to Mayo for autonomic testing. I’m so surprised! I guess smaller clinics might be better in this case!
APPOINTMENT WITH DR. JURGENS
DERMATOLOGY
- Dr. Jurgens was super nice!
- Our main concern was that my skin had been turning yellow for a while.
- We learned that it was because my beta-carotene levels were at 350 as I ate sweet potatoes for a whole year since it was the only thing that didn’t make my stomach hurt. Apparently, it will take at least a year for it to go back to normal. For reference, a normal person’s level is 50.
- We also learned my liver levels are elevated and we aren’t sure why, but that could contribute to the yellowness.
- Overall: She was super nice and helpful!
G.I. APPOINTMENT WITH DR. FOX
TOUCHING BASE
- Dr. Fox finally acknowledged I was right, and that the things she jumped to were not the problem.
- She wants me to still redo all of my testing, but she has still not reviewed the results of the testing I already did at Stanford.
- The testing she wants me to do would involve getting my tube taken out and put back in for a test that I already had done a month ago.
- I told her to review all of my tests and read the raw data herself and then get back to me on what I actually need to redo.
- Overall: Really frustrated with Dr. Fox for not listening or reviewing my files before asking me to do a bunch of invasive and painful procedures again. I want to give her the benefit of the doubt, but right now she’s just not listening to me. Hopefully, she gets back to us early next week with what I actually need to get done.
CARDIOLOGY TESTING
EKG & HOLTER MONITOR
- I just had to get an EKG and a holter monitor put on so it was all done in less than 10 minutes, but I will have to wear the monitor for the weekend.
- We are hoping to see if it will show anything that would indicate or support any of the potential diagnoses they might be looking at.
Into The Weekend
As we head into the weekend, I don’t really know what to feel. It has been great with everyone except Dr. Fox, who unfortunately plays a big role in helping me get to my final diagnosis so fingers crossed things get better with her.
Mom and I are exhausted so we are probably going to explore Rochester a bit this weekend and also get lots of rest.
As always – thanks for being here.
xx I love you, I mean it
DISCLAIMER
Please note that all content on this page, website, and any affiliated resources is for informational and educational purposes only. It is not intended to provide medical advice or to take the place of treatment from a physician. NO information on this page or website should be used to diagnose, treat, prevent, or cure any disease or condition. Additionally, please be aware that some of the links on this page may be affiliate links, from which I may receive a small commission if you make a purchase through those links.
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THESE EMAILS I SEND – I PROMISE – FEEL LIKE LETTERS FROM A FRIEND
Come Be Part Of The Bloom!
What is The Bloom? The Bloom is my personal letter to you, dedicated to supporting your growth and flourishing in all aspects of life – from your health, well-being and entrepreneurial pursuits to overcoming obstacles, discovering passions, stepping into purpose and finding avenues for positive impact – The Bloom is all about helping you create a life you truly love – whatever that looks like for you!
I like to think of The Bloom newsletter as the water, soil, or sunlight I hope to be able to give you to help you grow and bloom in your own life! That’s why as a member of The Bloom community, you’ll get heartfelt personal letters from me sharing stories, resources, tools, inspiration and support to help you on your personal growth journey.
I'm Haley James!
I’m a California-based purpose-driven, multi-passionate entrepreneur, chronic illness & rare disease advocate, speaker, podcaster, designer, YouTuber, content creator and really, at my core, just a woman who wants to love & help people!
More specifically though, I’m here to love & help support YOU by inspiring, empowering and equipping you to overcome your obstacles, pursue your passions, step into your purpose and create a life you truly love so you can use your stories and gifts to make a positive impact in the lives of others!
I hope you’ll join me!
I'm Haley James!
I’m a California-based purpose-driven, multi-passionate entrepreneur, chronic illness & rare disease advocate, speaker, podcaster, designer, YouTuber, content creator and really, at my core, just a woman who wants to love & help people!
More specifically though, I’m here to love & help support YOU by inspiring, empowering and equipping you to overcome your obstacles, pursue your passions, step into your purpose and create a life you truly love so you can use your stories and gifts to make a positive impact in the lives of others! I hope you’ll join me!
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THANKS FOR BEING HERE – I LOVE YOU, I MEAN IT ♡
