Need Patients' Experience with Mayo Clinic. Is it worth it?

Geez. $40k. I sure wish the US had a better system of healthcare. I'm glad you were able to afford it and don't regret it, but dang! $40k? I'd be dead.

It made for some tough years as we paid that off, but we eventually did. I agree that our medical insurance system surely needs a patient-centered overhaul, and not one with corporate profits as the goal.

Hi @eer. I notice on your profile you are pretty new on Connect. Welcome! Hopefully @nycdave7 will pop back in this conversation and provide an update as to how he is doing.

You mention a problem with a Kenalog injection in another conversation. Is this the same drug you are referring to that is difficult coming off of now?

I had a systemic reaction years ago to an injection in my shoulder and put two drugs on my allergy list because we didn’t know which ingredient caused it. That ended up being an unforeseen problem for a surgery, so I ended up pursuing an allergy challenge. I had an initial appointment near me and it just didn’t feel right when the doctor told me what I was describing sounded questionable. I felt like he as blowing me off. I opted to go to Mayo Clinic and challenged both drugs. One remains on my allergy list after having a not-so-typical reaction during the test. I am so, so glad this is documented because now it is something concrete that fits as a puzzle piece of my health.

How long have you been dealing with these symptoms?

Hi Janell, Think we may have crossed path on reddit before, your story sounds familiar. Anyways with me, I am roughly the same maybe worse. Since I last posted, I noticed a couple of things:

- Resting diastolic blood pressure has slowly crept from 88 to 95 - 98. Unfortunately, doctors are still dismissing me and won't put me on blood pressure meds because I am healthy and they dont think I have hypertension despite symptoms of palpitations and light headedness.

-I dont know if this is related, but more prone to infections like cold, COVID, and poor dental health (despite regular check ups, brushing my teeth daily, and flossing). Been getting many root canals

- Worst of it all, I was diagnosed with osteopenia, borderline osteoporosis. I am a male, 31 years old, 145 lbs, slim athletic fit, exercise daily via calisthentics, biking, and going to gym for strength training. Had to get a bone scan cause of hip pain

- Been getting 3 - 4 24 urine cortisol free tests in which they come back above elevated (usually a score of 65 - 70 in which upper limit is 50). My serum cortisol and midnight salivary comes back normal. I wont do a dexamethasone suppression test as this all started with prescribed steroid eye drops.

Overall I am losing hope and desperate to find a cure or effective treatment for this. I have seen on reddit where patients would get prescribed isturisa from JUST suppressing from a one time dex test. I am at a point in which I would like to try a small dosage of anti steroid medication to see how my symptoms get effective.

Thanks for you update @nycdave7 . I am not on Reddit so it sounds like there is at least one other person with my similar drug challenge experience.

I can relate to your dental health. Like you, I take care of my mouth. Your repeated root canals sound frustrating. I started periodontal cleanings every three months after switching to a new dentist, not accepting “you’re just getting older” as a reason for gum disease. I have heard quite a bit of problems in our bodies shows up in our mouths so maybe there is a connection.

You mention in your initial discussion above you were looking for answers and were not getting them from so many doctors you have seen. Did you end up going to Mayo Clinic? What does your care team look like now? This has to be so overwhelming, and trust is so important. Do you have a provider, maybe a primary care coordinating your care?

I applied for the Mayo Clinic around 2018 / 2019, but did not get in. At the time, It was not discovered that I had osteopenia. At the time, I dont really have a care team. Just switched jobs where I am basically on site and the health insurance offered is not great.. I am on a high deductible plan and based on my historical luck, I have not bothered getting routine check ups with an Endo. At the time typing this, I have hip soreness and pain as a 31 years old fit Male who does strength training consistently.

Yes, Mayo is worth it. I was treated 10 yrs ago for prostate cancer with proton beam radiation- 40 brief treatments over8 wks- free lodging at Hope Lodge on the Rochester Mn Campus ( for cancet patients ) i still have sexual function at age 82 . I avoided surgical removal of my prostate and the often terrible side effects of that surgery. Mayo Rochester is a facinating place. Fly to minneapolis and shuttle van to Rochester or Amtrak to St Paul mn, short bus to minnespolis airport and catch shuttle van to Marriott
South - free hotel shuttle there to Clinic and return -newer hotel w pool -very good free breakfast. Email me for more info - don

(You can do this w/o a car)

@nycdave7
It hard to know the excellence of other clinics and hospitals outside what is called speciality medical facilities. I believe there are some very good care facilities and doctors outside the known speciality medical facilities.

You asked about Mayo and is it worth it. I have been a patient at Mayo Jacksonville since 2006. Mayo's motto is "Patient First." What I read from your post that is not what you are getting. My feedback would be then yes Mayo Clinic and other top medical facilites are worth it.

Prior to Mayo being my primary care facility I was being treated for heart failure in a small city. When it came to be told I needed a ICD/Pacemaker I sought a second opinion at Mayo Jacksonville. I was so impressed by the doctors that I immediately change to Mayo as my primary and speciality care facility.

Mayo uses a team approach to your medical and pyschological care. I don't think you can go wrong seeking care and second opinons at any of the Mayo Clinics.

In 2015 I moved to a city just south of Jacksonville. Prior to that I lived 3.5 hours away from Mayo Jacksonville but I made the drive as I and my wife were extremely impressed the experience, professionalism, and "Patient First" motto. I now live 25 minutes away. May wife and I have outstanding primary care doctors and speciality doctors.

Mayo Jacksonville uses a portal system. I have messages send directly to me by my doctors. Any tests I have are sent to me via portal. I can go on the portal and send a message to my doctors and get a response. You can also use it to make appointments, get refills on prescriptions, and review tests done, etc.