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@dawn_giacabazi

@colleenyoung
All fantastic helpful tips I have used over and over again. I am not a doctor, but I certainly have a lot of experience in trying to find answers for myself and for many of my patients that I see in my practice.

I would like to share a few things I have learned. No one can advocate better for us than ourselves. We can either sit and feel sorry for ourselves or we can get up and do something about it. I am one of those people that never fit into a textbook. 😊 My doctor says I have a habit of challenging medical journals and helping him write addendums to them . I learned a very, very hard way that if I want to get answers and I want something to change that I have to do something about it and being prepared is the best way to start. I still keep a notebook by my nightstand and even in the middle of the night when I can't sleep, I write down questions I think of. I Keep a journal and take that journal to doctor's appointments. I keep a journal for blood pressures, glucose, symptom log and a food diary. Those journals helped me help my healthcare team find the answers. A turning point for me was to stop thinking of my doctors as my doctors. I started telling myself we are a healthcare team and a team must work together. I can't expect my doctors to get answers if I'm not willing to share valuable information. Once I started looking at them as team members and we were all on the same side trying to reach the same goal, we started to unravel the diagnosis.
Thank you
Dawn

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Replies to "@colleenyoung All fantastic helpful tips I have used over and over again. I am not a..."

I would like to share this with you from the NIH Natural Library of Medicine.This is a copy/paste.Early detection of multiple myeloma in primary care using blood tests: a case–control study in primary care.
INTRODUCTION:
Multiple myeloma is a rare malignancy, characterised by clonal proliferation of plasma cells. These cells secrete immunoglobulins (paraproteins), which can lead to plasma hyperviscosity and renal damage. Proliferation of plasma cells can lead to bone marrow suppression, and may cause hypercalcaemia. These various features of myeloma give rise to different symptoms, such as bone pain from direct skeletal involvement, fatigue from anaemia, or headache from hyperviscosity. Presentation with complications from hypercalcaemia or renal failure is also common.

Diagnosis of myeloma is often difficult. Patients with myeloma have the longest intervals from initial symptom reporting to diagnosis of all common cancers, with the most consultations in primary care before referral.1,2 Longer diagnostic intervals in myeloma are associated with more advanced disease stages and more complications at diagnosis.3,4 Patients who are not referred to the appropriate department generally experience a longer diagnostic process.5 A large proportion of patients are diagnosed through emergency presentations, with concomitant worse survival.6,7 A recent study reported that 77% of all myeloma emergency presentations had at least one primary care consultation before the emergency and 56% of these had at least three.8

This prolonged diagnostic process probably represents the non-specific nature of myeloma symptoms, with positive predictive values for symptoms < 1%, even in combination.9 Guidance from the National Institute for Health and Care Excellence (NICE) uses an urgent cancer threshold for referral of 3%.10 In myeloma, symptoms need to be combined with abnormal blood results such as full blood counts (FBC), calcium, and inflammatory markers to reach that threshold. The inflammatory markers C-reactive protein (CRP), erythrocyte sedimentation rate (ESR), and plasma viscosity (PV), when considered together, have been used for diagnosing myeloma but have not been reported individually.11–13

The aims of this study are to identify the best inflammatory marker for initial investigation of possible myeloma, useful blood tests for ruling out symptomatic myeloma, and how to distinguish early and late features of the disease. Symptoms can occur up to 2 years before diagnosis in other cancers, but little is known about the timing of symptoms and abnormal blood test results before diagnosis in myeloma.14,15 The latter can explain why some features have better rule-out properties than others as features that manifest very late in the diagnosis can be useful for ruling in the disease but not as useful for ruling it out. This is just a part of this study. I wanted to point out how long it takes for Primary Care Physicians to get the ball rolling for their patients. By the time MM patients are finally diagnosed, unfortunately they are already in stage 3. I can't even count how many People's testimonies I have read on blogs on Myeloma Websites that Patients claim they went to the PCP with blatant symptoms of MM, or SMM, multiple times, and never get the required tests to rule out MM, or to confirm MM. Is this negligence?
I have even expressed my concerns to my DO I AM concerned I MAY have MM, and she ignores it, or is "Not concerned" when she views my standard blood work tests. I am STUCK where I am. I have no choice to go to this clinic or keep running up the ER. The majority of Doctors practicing in my clinic are Residents or PA's. Because this is a "Teaching Clinic", they come and go at a very rapid rate. You NEVER have the same Doctor long. When your "Doctor" leaves they ASSIGN a new one too you. I have tried over and over again to get a new Doctor at a different clinic(Same clinic but just different locations) I am told "No one" is accepting new patients. One Doctor is however, booked for the year. I was referred to Neurology, it could be 4-6 months before I get an Appt., & yes, I was told this by them. My saving grace is at a totally different clinic but in the same network, that accepts my insurance. I am able to see this Internal Medicine Doctor in January, 3 months from now.
Do I feel screwed? Yep. Do I feel I am being gaslighted? Yep I do. Do I feel lost in the system? Yep. Do I feel my Doctor is inept? Yep I do. Do I want a different Doctor? Yep. I asked about this to switch and they are all the same. I have seen 2 besides my regular Doctor and I will never see them again. I actually had to file a complaint and spoke to the Supervisor.
I am thee only one advocating for myself. Believe me, that is the truth. ~