r/MayoClinic

(this post is abut my catecholamine norepinephrine study at Mayo Clinic in Rochester Minnesota)

Any help/comments are appreciated! Little lengthy sry.

I’m going to start by giving a little bit of background. I’m a 24F that’s had chronic pain resurface starting about a year ago. As it progressed I started developing neurological issues such as tachycardia, syncope, shortness of breath, sensory overload, exercise intolerance, etc. so all textbook POTS. Every doctor i’ve seen in the past year has suggested POTS and HEDS.

While awaiting a comprehensive autonomic evaluation at Mayo in Rochester I was still seeing doctors where I live to get any more idea/guidance as to what’s going on. I ended up being put on Propranolol, diagnosed with HEDS, and meeting the criteria for POTS during an in person test with a cardiologist even on Propranolol. Knowing all of that I still wanted a more thorough evaluation at Mayo hoping they could tell me more.

I just got back and have had the results from each test come rolling in but am still waiting for my diagnostic review post testing. It’s not until October 15th and am a little alarmed by the most recent test result and anxious to speak to her about it. So while waiting patiently I figured I would come on here and ask about my results. I’ve done some research but want opinions and to hear from people with lived experience.

The test I’m referring to is the Catecholamine Endocrine Study. Everything was very controlled at Mayo. I laid in a dark room with no sound or phone for 30 minutes with the IV already in my arm. When the 30 mins was up, the nurse came in to draw my blood at that relaxed state. Then she had me stand for 10 mins (brutal lol) and then she drew my blood again. Just got my results back and they say my supine (laying down) norepinephrine level was 593 pg/ml then after standing for 10 mins it nearly tripled to 1808 pg/ml. The test was flagged abnormal and high. I know the criteria for hyperadrenergic pots is going over 600 pg/ml upon standing but mine was nearly that just laying down.

I guess i’m just asking for opinions/analysis as i’m still waiting to go over everything with the neurologist. Anything helps!

Long story short, I had an old best friend back in High School. Him and I were friends for 4 1/2 years. Then we drifted apart and went our separate ways which I absolutely understand. A few years later, It was brought to my attention that he was at Mayo Clinic getting treatment for cancer.

A month and a half ago, I go to Mayo and I ask the front desk if he’s there and they confirmed he was. So I wrote him a nice get well card and brought it to his room. The front desk clerk wrote his room number on a small card. I went there, dropped it off and then respectfully left.

A month and a half had passed and there was no update on his condition. I was kinda worried about him. I asked friends around me and coworkers too. They all said that it doesn’t hurt to go back one more time and ask if he’s at least okay since they noticed I was getting a little worried about it.

So I showed up back at Mayo and went to the front desk. I respectfully asked if my old best friend was still there or if maybe he was discharged or if he is still doing okay. The front desk clerk looked up his info, then said “please wait” and 2 minutes later 4 security guards showed up asked why I was there. I told them the situation and they told me “He is not here. Please leave through these doors here.” And security walked me out and said “Have a good day.”

The last time I visited, It was a smooth experience. Nothing at all went wrong. The nurse even told me that it was very sweet that I was thinking of him even though it had been so long. I wasn’t told at Mayo or later on that he didn’t want to see me. It just seemed pretty casual. But showing up the next time seemed like I committed a crime? Security didn’t say don’t come back or anything. They just escorted me out.

I PROMISE I was not at all being rude or anything like that nor was I demanding any sort of answer or explanation. I just wanted to know if there was a status they could give me or if he was okay. That is all. And yes, I do understand HIPPA and was very respectful.

I just need an opinion. Did I do anything wrong? Or did I step a boundary? Will I get into legal trouble?

Hey y'all, I got approved for an appt on Nov 16 (!!! way faster than I thought) for long COVID symptoms. However, I'm on an HMO (Blue Care Network in MI) and got a notice that I need pre-authorization. Has anyone dealt with this? Is it even possible?

I am diagnosed with Mixed Connective Tissue Disease (the autoimmune disease that is a cross between lupus, scleroderma, myositis, etc…) and have all the classic immune markers and symptoms but I have additional symptoms that do not seem to fit (drastic hormone fluctuations, GI inflammation, autonomic nervous system problems, reproductive organ problems, etc…)

I have an appointment with Mayo Clinic Rheumatology in Jacksonville coming up and I’m hoping they can get me treatment for the mctd but also find the cause for all my other symptoms. It’s been a complex diagnostic puzzle that my doctors at home just seem to no be interested in solving.

That being said, does anyone have experiences about their rheumatology clinic, and specifically Dr. Ronald Butendieck if possible they can share? What can I expect? Good or bad experience? Are my expectations likely to be met? I’m really nervous about being dismissed or left hanging medically again.

I saw a short sentence about someone mentioning the Rochester hotels having special rates for people coming for Mayo. Anyone have more details on this?

I called Hyatt and they mentioned a “special” rate specific to people with extended stay for cancer care. Thankfully cancers not what I’m going for but I thought it was sad the rate she offered to “honor” for me was higher than a normal online booking through their website.