Don't know what to think and feeling uncertain at this point

I just sent her a My Chart message. I am past being frustrated. I requested these tests. It has been 3 months. As each month crawls by, if I have MM, it is progressing. She goes by my CBC, Basic Metabolic Panel and Comprehensive Metabolic Panel numbers, so did the Hospital, 3 times. I don't think she knows anything about MM or MGUS or SMM.
Sadly, and frighteningly, the clinic I go to are all at her caliber. She did request a neurologist for me, still no call from them. I called them twice and they say "We are triaging" your case. By the time they call me , it will be 2024. I will say I have been diligently, intentionally leaving a detailed precise "Digital paper trail" on My Chart with ALL my symptoms, my deep concerns I have MM . She is a 4th year DO at this clinic, because she is a Resident, the administrators read all correspondence, her decisions, her diagnosis's of all her patients. Because she flat out told me I do not have MM, and wants to put me on anxiety meds because I am "Worried" about it. This is a true living hell.

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Please consider shifting it and telling her Monoclonal Gammopathy of Unspecified Significance (MGUS) not MM. See if she can just look at those labs. Which are actually the same for the initial diagnosis for both. She is probably looking at your White Blood Cells (WBC) for a slight indication of immunities, Hemoglobin (HbG), which would indicate anemia, Kidney Function labs, Calcium, and Protein because there are not a whole lot more that those simple labs could indicate in regard to either MGUS nor MM.

By the way, I saw you had disclosed your age of 63, I'm 65, to be 66 next month, diagnosed on 2/15/22.

Personally, I'd go else where - where they are more savvy to this blood disorder. Wish you were able to take a road trip to Mayo😢 Best wishes.

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Thank you so much for responding. Words can not express that I feel I am in a living hell right now with my Clinic. This is the problem. I tried to go to a different clinic last month, clinics that accept my insurance. I called a specific clinic my insurance works with. I ask to get set up with a Doctor. I was told, our Doctors are not taking any new patients, there a is a Doctor shortage. Explained this was a National problem since Covid. Doctors quit, nurses quit. Called another clinic. 2 Doctors taking on new patients. One is gone until 2024. The other is booked up for the year! called other "Locations" of my Clinic, told the same thing, Doctors are not taking new Patients. I did however finally a Internal Medicine Doctor at a different clinic and the appt. is not until January. I am STUCK with my clinic at least until then. I would like to copy/ paste to you in private message what I wrote to her in My Chart. I could NOT have been more precise and to the point. I am falling on deaf ears or I feel like they want me to suffer. I called my clinic yesterday, spoke to a nurse to ask for a upper body Xray for my ribs and spine. Nurse #1 took all my info down & sent it to my Doctor. A different Nurse just called me this morning and said she said Dr .*** already took a Xray of your shoulder. I said, that is NOT why I called! Yes, I had a Xray on my shoulder on the Oct. 9, but these are new symptoms! It is my ribs and my thoracic spine. The nurse yesterday wrote all that down. So, this nurse this morning said, Oh, I 'm sorry maybe Dr.** didn't read it right. I'll run this back to her again and call you back. This is the shit I deal with all the time!!!!!! Now waiting for the nurse to call back. I will probably have to resort to the ER to get anything done.

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Really sorry this is happening. Even if they don’t think MM is present, there are many differential diagnoses directions they would validly investigate instead of just labelling you with anxiety as the cause of your symptoms..I feel like being anxious with being silenced and basically ignored is justified, especially with your symptoms not being thoroughly investigated at this time.
I hope you get some response from a proactive specialist.. what you’re going through sounds like the system in Australia, where people struggle with this approach for years before getting any legitimate investigations and then get taken seriously. I myself was told repeatedly I had munchausens for years before I was referred for tests, and found to be telling the truth and in fact was not lying for the purpose of receiving attention (munchausens) while those doctors snort derisively right in my face.
I hope you can find proactive care, and get some investigation into your symptoms 🌺

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It's a nightmare isn't it? I have read countless stories here on Mayo forum that many are blown off by the PCP's, their GP's, going back over and over again with being dismissed. What the hell do they teach in Medical School? I have lost total trust of the medical field to be honest. Inept. Uncaring. ~ I feel we are nothing but cattle being herded into stalls. Is it Big Pharma? Is it Insurance Companies? How can they be so dense not to see red flags with patients?

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I completely empathise 🌺
I wish there was a means to ensure these people upheld their professional responsibilities, however recourse only comes with gross negligence - and in Au it’s almost impossible to prove it because of our systems; even when people die from negligence, the docs still practice as if nothing happened.
I believe it starts with apathy and a corruption of perspective and power: apathy because they are not held to account and start to believe that they are demigods, with the power/little accountability to treat people with utter impunity by judging them as ‘worthy’ or ‘unworthy’ using a completely subjective and nonsensical internal scale of likability/credibility on presentation…a great example of this is a doc telling me that because I look fine, there couldn’t possibly be anything wrong (complete with snort, shake of head, and sideways gaze down its nose); to which I responded I didn’t know they taught ocular xray skills at medical school 🤦🏻‍♀️
My mechanic would never say to me oh your car looks fine, so there’s nothing wrong with it - no; he listens to my report of the symptoms and gets to work investigating and diagnosing the problem, and promptly tells me what is needed to fix it. He doesn’t tell me my car is a liar, or that if he can’t find it on cursory examination that the problems isn’t there. If he did, I’d say he would be out of business kinda quickly.
The difference with medics is they have the market in their vice grip, and know that people are a commodity that can be much easier manipulated when they’re vulnerable and unwell, and have few options for care.
So, apathy, moral and ethical corruption, abuse of power, and rampant god complex. Everyone has been working hard through covid, not just medics. I have a lot more empathy for the everyday people who put themselves at huge risk without access to the workplace protections that medics had, like cleaners, sanitation/water/sewage workers, PPE manufacturer workers, and others who worked with other exposures during the pandemic - these people are the ‘heroes’ that prevented spread; critical to reducing the load on the medical community, and yet they take all the glory (and have no hesitation in promoting themselves as such), and acting like they’ve been harmed by a great burden. What about the people you’re paid very well to care for?
I know my feelings don’t resonate with everyone, and it’s based solely on my experiences, but regardless of what my opinion is, they are hurting people by treating themselves like something above everyone else, an area of work that collectively deserves a 5-star holiday while patients are still suffering, and conducting themselves like fools when neglecting their duty and getting away with it because there is no other alternative medical pathway for people.
Keep calling them, keep telling them how they have stuffed up, and keep holding them accountable.
I do tell my doc how I have more professional respect for the diagnostic skills of my mechanic than I do in their use of all the years of wasted education they’ve undertaken; no hesitation. And then I say that incredulous face you’re giving me right now has no place in this consultation. Do..your..job.
I have been known to be short and sharp when they don’t meet appropriate industry standard these days…🙂

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You wrote this to perfection, and I wish many doctors would see your post. Yes, the small god syndrome is prevalent. Many as well gaslight their patients. I have learned the hard way to fight like a bull with my health. I have learned, the hard way, that I am my own advocate. My Doctors wouldn't give a crap if they saw my name in the obituaries months from now. Many people have said doctors have narcissistic personalities, and many patients have talked about these doctors in blogs. I almost have a sense of jealousy when someone says they have a great doctor, for I have yet to find one. Food for thought- Misdiagnosis: How Common Are Misdiagnoses? Study Finds 7.4 Million A Year In USA ERs. In the 130 million annual visits to the U.S. emergency departments, the study by the Agency for Healthcare Research and Quality estimates that diagnostic errors end in death for as many as 250,000 patients, while another 370,000 suffer serious harm. This is just the USA alone. How can the Medical Profession be so pompous with ego's to match with this kind track record? This is terrifying. ~I will tell you this though, I would take a white haired 70 year old doctor with thick glasses any day over the young Doctors/Residents today. They have bedside manners, they have wisdom & experience and way past the egomania persona. To justify my distrust in Doctors is it has affected my Family personally, Myself included. Misdiagnosed many times. ~ When we are ill, we instinctively rely on the Medical Field to treat us with compassion, to "Hear" us. They are suppose to be great healers, but yet, that seems to have changed.

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Thank you so much for responding. Words can not express that I feel I am in a living hell right now with my Clinic. This is the problem. I tried to go to a different clinic last month, clinics that accept my insurance. I called a specific clinic my insurance works with. I ask to get set up with a Doctor. I was told, our Doctors are not taking any new patients, there a is a Doctor shortage. Explained this was a National problem since Covid. Doctors quit, nurses quit. Called another clinic. 2 Doctors taking on new patients. One is gone until 2024. The other is booked up for the year! called other "Locations" of my Clinic, told the same thing, Doctors are not taking new Patients. I did however finally a Internal Medicine Doctor at a different clinic and the appt. is not until January. I am STUCK with my clinic at least until then. I would like to copy/ paste to you in private message what I wrote to her in My Chart. I could NOT have been more precise and to the point. I am falling on deaf ears or I feel like they want me to suffer. I called my clinic yesterday, spoke to a nurse to ask for a upper body Xray for my ribs and spine. Nurse #1 took all my info down & sent it to my Doctor. A different Nurse just called me this morning and said she said Dr .*** already took a Xray of your shoulder. I said, that is NOT why I called! Yes, I had a Xray on my shoulder on the Oct. 9, but these are new symptoms! It is my ribs and my thoracic spine. The nurse yesterday wrote all that down. So, this nurse this morning said, Oh, I 'm sorry maybe Dr.** didn't read it right. I'll run this back to her again and call you back. This is the shit I deal with all the time!!!!!! Now waiting for the nurse to call back. I will probably have to resort to the ER to get anything done.

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It's a nightmare isn't it? I have read countless stories here on Mayo forum that many are blown off by the PCP's, their GP's, going back over and over again with being dismissed. What the hell do they teach in Medical School? I have lost total trust of the medical field to be honest. Inept. Uncaring. ~ I feel we are nothing but cattle being herded into stalls. Is it Big Pharma? Is it Insurance Companies? How can they be so dense not to see red flags with patients?

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@sallylynn, I hear you. This must be very frustrating for you and I hope you will be able to put into action some of the helpful tips members are sharing with you.

Let me see if I can summarize in brief (overly brief I realize) your situation (as I understand it) in order to help move things forward. I want to help you get out of this terrible vortex of not getting the help you need.

1. You are experiencing symptoms that require attention. As of yet, you do not have a diagnosis.
2. You have reported to ER with symptoms that were alarming, but received no diagnosis.
3. You have seen a number of physicians in different specialties and many tests have been ordered.
4. Tests have shown normal levels and some tests showed values slightly out of range of normal. However, tests ordered thus far have not clearly indicated a diagnosis.
5. Without answers, but still experiencing symptoms, you have turned to the Internet to find clues and hoping to find answers that doctors have not yet found.
6. Today, you continue to seek answers. Your frustration with the medical system continues to increase and finding a place that takes new patients to get a second opinion is near impossible.

I realize that this is over simiplified, but do I have that right so far?

It is terrible to feel blown off by medical professionals. I wish that you didn't feel that way.
I know that some doctors have chalked your symptoms up to anxiety. I bet it can look like that to them. Sometimes we get so frantic without answers that frustration, anger, and yes anxiety too, get balled up into one big mess. I get it. That doesn't give any professional the right to dismiss your concerns as anxiety. And if they suspect anxiety, then that should also be addressed. Never dismissed.

There are many many doctors that care and want to help.

Good for you for finding a new clinic and getting an appointment. It's frustrating that you have to wait until January. But you have an appointment! That's a great start.

What can you do between now and your appointment to prepare for your appointment? How can you be the best partner you can be to work as a team with the new specialist?

I hope members will join me in sharing their tips to help you develop a plan, get a diagnosis, and get your life back again.

Here are my tips:
1. Start a journal and make note of your symptoms:
- Describe the symptom
- How severe is it? Grade it as a 1, 2, or 3
- When does it happen?
- What were you doing when it happened? Note possible triggers
- How long did it last?

2. Prepare a list of questions
Keep a pad a paper or your phone near your bed and favorite sitting place. Questions come up in the stangest of places.
Shortly before your appointment, organize your list into categories. Prioritize 1 to 3 items that you need to have addressed. There may not be time for all the questions. Or some may be answered during the appointment.

3. Find a family member or friend to accompany you
It can help to have another set of ears to remember what the doctor said. Or even to ask your questions should you be overwhelmed or forget to ask. Of they may think of questions during the appointment.

Here is a fantastic discussion where members have shared more tips. As you'll discover, I kinda stole the best tips and shared them with you. 🙂 Cuz, like you, I learn a lot from fellow patients.

– Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

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