Help with understanding test results

@rebaba I can imagine that you are frustrated with the medical merry-go-round. Rheumatologists ARE the doctors who treat autoimmune diseases. The biggest problem with this is that autoimmune diseases are barely taught in medical school until now. The incidence of AD has really jumped recently so the doctors have a lot of catching up to do. You can find a more up-to-date physician by going to a comprehensive medical center ( and the doctors take Medicare!)
Can you picture seeing a really good rheumatologist and not getting a diagnosis?

I’m in Southeast Florida

in response to your question of how i found my two good specialist:

1. In 2017, i had surgery on
my shoulder. An x-ray related to my shoulder showed that i had some growths on my lungs. i called Cleveland Clinic scheduling, described the issue and was given an appointment with the only pulmonologist i’ve ever seen. He ran a battery of tests and found that i had asthma based on a test that is rarely used. i have NEVER tested positive for asthma on a traditional spirometery test. Re the allergist, he is also at Cleveland Clinic and i made an appointment with him after i had an anaphylactic reaction to a drug. I have the good fortune of having a health insurance plan that does not require PCP referrals.

At times, i ask doctors i trust to refer me to their trusted colleagues. i tend to quite quickly dump Drs i don’t trust and/or are dismissive to me.

I wish you the best of luck in finding and connecting with Drs who you trust and are concerned about you. When i have new or exacterbated health problems, i generally quickly and concisely send “my chart messages” to
my drs detailing the situation. Often their nurses respond on their behalf. i also tend to be clear in asking for what i think i need eg a holter monitor during a period when a pcp noted my heart beat was irregular but 5 minutes later did an eKG that was normal.
i don’t know if what works for me will work for anyone else.

@elisabeth007, I'm glad your appointment with the neurosurgeon restored your confidence in your care and that his office was able to get the MRI images for comparison. I encourage you to contact the Office of Patient Experience at Mayo Clinic. They will want to know about the logistical issues you encountered to find out what happened and improve the communication chain. Here's the contact information:

Mayo Clinic Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

What are the next step with Dr. Byrne for you now?

Dr Byrne knows and trusts the NS i’m seen in Miamu. He said i can follow up with MRI i have scheduled in Miami Nov 6

Thanks. i have sent an email to Mayo Office of Patient Experience

@elisabeth007 I also think it's best to not linger with a doc who doesn't feel right-I learned that the hard way with a PCP years ago, who was a very bad match. Since then, I had another "iffy" reaction to a pulmonologist (no pun intended) didn't return and now need to find a new one. Among other things, that pulmonologist charged Medicare an office visit fee-for answering a quick question I sent to her through My Chart and that has never "sat" well with me. No other docs I see have ever done that. I also have a Medicare supplement that allows me to see a specialist without a referral but is costly. I was under the impression this was true across the board for Medicare- but I am no longer certain of that. After what I have gone through so far (with good ins), I am concerned over the additional obstacles some people face who don't have good ins.

We all have the right to challenge questionable bills but particularly for people who don’t have graduate degrees in forensic accounting and who aren’t billing specialists, it’s far from easy.

I am a former Medicare fraud investigator. Medicare is confusing to many and when people are signing up at times they are dealing with aggressive sales people.

“Advantage plans” (the ones that come with vision, dental plans and free rides to doctors offices—-are forms of managed care that the government contracts out to private companies. Those companies have an incentive to manage medical expensive to maximize revenue of the corporation. “Original Medicare” like you and i have, tends to be considerably more expensive and is intended to provide us as policyholders with much more control in self referral and in getting multiple second opinion.

What you mentioned re getting billed for asking a simple question appears to represent a relatively new “policy/protocol@ that i first saw emerge about 18 months to 2 years ago. What i saw was a number of major medical facilities starting posting on my chart that they reserved the right to bill patients for asking questions. The criteria for doing so, is highly ambiguous and acceptable medical coding and billing can’t represent an outright lie.

@elisabeth007 @becsbuddy Your post is very interesting, thanks. It appears to be one major medical system, University of Md, that "rubs me the wrong way". In addition to questionable Medicare charges, I am now encountering a new problem with them while trying to find a Rheumy for the first time, for the first auto immune test I've ever had. This particular medical "system" does not want me to fill out any patient questionnaires or history of any sort, before seeing one of their Rheumys. They insist they already have my info in their computers, (from my seeing a very few other docs over the years, for unrelated complaints). Since the docs I see most are in another medical system, and not "connected" to My Chart- the info available in My Chart is incomplete (at best). Further, some of my symptoms started 50 years ago (before computers) and other symptoms seemed not "noteworthy" even until I got the auto immune test results recently. I hibernate in the summer months and am greatly slowed-the idea of having to speed read and explain my list of symptoms, without a formal questionnaire is daunting. (Possible solution: fill out one of the downloadable indepth questionnaires provided on-line by rheumatologists at other medical centers and submit that well before my appoint time.?)

The U of Md "appoint. makers" also insist that I am not a "new patient" since I am already in their "system" (computer), from seeing just a few of their docs over the years, (for totally unrelated complaints). An earlier attempt resulted in the office wanting me to fill out forms in their office, before my appointment, for a 30 min appoint slot. I feared that may very well have left me with 15 mins face time with their specialist, in addition to half-filled patient history, and I cancelled.

Just yesterday I found a Rheumy, also at U of Md, that takes new patients and made an appointment. It was only later that it sunk in that there was (again) no patient history needed. when asked. When I checked My Chart the appoint was listed as "new Patient"-but I've no real idea how long that actually is. I guess I could call Monday to find out, except there is the no (complete and accurate) patient history to contend with again. It was only then that I realized it is this one particular medical center outfit that "triggers" me, because of their "office practices".

I feel a round hole trying to fit into their square slot "office practices". Because my symptoms have been accumulating over 50 years, it feels ludicrous to believe I can be "heard" and Dx'ed (based on out of date, incomplete patient info) and have my questions answered-in 15-30 mins time. I did not experience these same constraints with another nearby medical "system" but their rheumys are not taking new patients at this time. Fortunately, I am not in dire need and believe I need to be seen there-in order to avoid these exhausting mazes. Not sure if this is "drive-thru, fast food" medicine being practiced at U of MD but it hurts my soul, and I feel for the demands being put on their docs.

My hubby has the lesser cost "HMO like" Medicare supplement. I am beginning to wonder what the benefit of my expensive supplement plan is, if I have to wait months to see a specialist for a "real" visit.

have you tried contacting patient experience/patient advocacy? Also, do you know about option to amend/correct factual errors in your record via “health information records” . There is a specific protocol.