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

Posted by sallylynn @sallylynn, Oct 15, 2023

3 months. Let's begin. July 26 full body neuropathy out of no where. July 27, ankles ache & shines. Did have UTI. July 27 flank pain. ER visit July 28. Expressed to ER neuropathy/ankle pain. Doctor ran labs. All good. Doctor had no answer. Sent home. August. Getting worse.Neuropathy intense/bone pain. See my doctor. Express my fears. Questioned if I have MM. Doctor tells me no, wants me on anxiety meds. Tells me to my face I do not have MM. Pretty bold w/o running specific tests for it. Continuous pain. No sleep. Scared. Dr. Googling a lot. Learning about MM/Auto immune diseases. Aug 24 severe tingling/ache. Go to ER again. . Tell them all symptoms.They run many blood work tests/Urine test. They come in room & tell me all blood work is good. Say I have neuropathy and RX Gabapentin. Getting depressed. Convinced I have MM. Feel my Doctor is not taking this seriously. Sept. No improvement but feeling worse. I am elated if I get a few hours w/no pain. Sept.11 go to clinic for a BMP. Looked OK, but freaked with a lower Anion Gap at 6. Aug. 24 it was 11. I write my Doctor a my chart message totally scared. She said she was not concerned, Anion Gaps fluctuate. Each day I feel is a mental game. Sept. 30. Severe tingling/ache in both legs, at this time I had lower back pain & had adjustments. Went back to ER. Had an Xray of lower lumbar/pelvis. They were not going to do BW but I I asked(Very nicely) & Doctor ordered a Comprehensive Metabolic Panel and CBC. Sat in waiting room. Called into a room & the Doctor said Xray fine. Blood work fine, RX's a steroid pack I did pick up but did not use. My Anion was at 7, however, a slight lowered Red Blood Cell, was 4.1 in August, and lowered to 3.8 Sept. 30 at ER. 3.8 is the lowest of normal range. My Creatinine was good. Calcium good. Albumin lowered slightly to 3.8. White Blood Cell normal. Protein lowered from 7.2 to 6.6. Chloride above normal at 109. 107 is the high normal range. ~ * At my doctor appt. I had my doctor examine my shoulder, have had problems w/it for several years . She is a DO btw. She said I have frozen shoulder. Set up PT. With this left shoulder the pain is different and intense. Had an Xray on 10/9. They say no fracture, anything strange. They did say question small faint calcification or ossification adjacent to the humeral head near the greater tuberosity. ~ I wrote a my chart message to my doctor and a different doctor wrote to me and said this is normal for a person my age (63) and not concerned. What concerns me is my right shoulder is feeling slightly the same as my left. As of current my center upper back does ache. Bottom line, I feel I am showing symptom of MM & my doctor & the hospital keep telling me I'm good. Maybe it will take mt crawling on my hands and knees to the hospital for them to take this seriously? At his time, no test was done to check for M protein.Comments are welcome. Thank you.

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@sjgray

Sometimes I feel as though we get to a certain age and there is no more interest in us. We're on our way out, so why bother. Sad, but
it does seem like it.

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I am feeling this way. 🙁

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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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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. ~

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@colleenyoung

@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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Thank you so much for your response.
To your question #1. Yes, I have symptoms and no diagnosis.
To question #2. Yes. Have been to ER July 28, August 24, Sept. 30. They did run blood work/Standard Urine sampling. Yes, I expressed my symptoms in detail & how long I have had them. They are going on standard blood tests.
Question #3. No, I have not seen any specialist's, only my DO at my clinic. DO put in referral for Neurology. They are still "Triaging" my case. I was told it could be 4 months or longer before I get an appt. They will call.
Question #4. Yes. Some tests are normal, and some slightly out of range. I intentionally question every single number out of range and ask why and IF they are concerned. The answer has been, "Not concerned". I go through my labs with a fine tooth comb.
Question #5. Yes. I have turned to "The internet of things" for my answers. I feel I have no choice.
Question #6. Yes. I am scared, confused, I am convinced I do have MM, which I told my Doctor in my appt. She said "You do not have MM, how can I help you to get that out of your mind?" I was stunned she told me this with NO required tests to deny or confirm MGUS, SMM, or MM. This scared me because this proves she knows NOTHING about MM. I desperately want a better Doctor, but I am stuck as of now. Jan. I see a new doctor and different clinic.
Yes, you have it right. In reel time this is how it is. I feel I am in a living hell. I feel like absolute shi*t and the Medical people do not give a damn. ~

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@sallylynn

Thank you so much for your response.
To your question #1. Yes, I have symptoms and no diagnosis.
To question #2. Yes. Have been to ER July 28, August 24, Sept. 30. They did run blood work/Standard Urine sampling. Yes, I expressed my symptoms in detail & how long I have had them. They are going on standard blood tests.
Question #3. No, I have not seen any specialist's, only my DO at my clinic. DO put in referral for Neurology. They are still "Triaging" my case. I was told it could be 4 months or longer before I get an appt. They will call.
Question #4. Yes. Some tests are normal, and some slightly out of range. I intentionally question every single number out of range and ask why and IF they are concerned. The answer has been, "Not concerned". I go through my labs with a fine tooth comb.
Question #5. Yes. I have turned to "The internet of things" for my answers. I feel I have no choice.
Question #6. Yes. I am scared, confused, I am convinced I do have MM, which I told my Doctor in my appt. She said "You do not have MM, how can I help you to get that out of your mind?" I was stunned she told me this with NO required tests to deny or confirm MGUS, SMM, or MM. This scared me because this proves she knows NOTHING about MM. I desperately want a better Doctor, but I am stuck as of now. Jan. I see a new doctor and different clinic.
Yes, you have it right. In reel time this is how it is. I feel I am in a living hell. I feel like absolute shi*t and the Medical people do not give a damn. ~

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* I am very detailed with every symptom and I intentionally log everything in My Chart. That is a "digital paper trail" that can NOT by law be erased. Every single detail I send to my Doctor in detail even with times and dates. I still have to download it in my computer.

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@sallylynn

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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My sister had Multiple Myeloma. She was fortunate to have a Urologist who said, "Something is wrong here," when he saw the results of a urinalysis test. She was showing no symptoms, but the doc sent her right away for a bone marrow biopsy, which confirmed MM. Patients are living 10-12 years with MM, if they can go through a bone marrow transplant. My sis wasn't physically up for that. She passed about five years after diagnosis. That was four years ago. I still miss her terribly.

I pray for you to have answers soon. Perhaps if you see a Urologist?

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