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

I have been to the ER July 28, August 24, and Sept 30. Each visit I explain in detail my symptoms. They tell me I'm fine based on my blood work and send me home. I have had multitudes of blood tests & several urine tests. I have seen my doctor 3 times in 2 months. I have had Xrays at ER of lower lumbar at Hospital, and Xrays of my left shoulder at my Clinic. I was told I am too anxious and my doctor wants to put me on anxiey meds. I asked her point blank if I have MM and she said no. Then I would like to know what is wrong with me. I feel I am not me anymore. 3 months now of this. day in and day out. ~ Yes, I am scared out of my mind. I am 63 years old just if anyone wondered. ~ Thank you.

My heart hurts for you. I hate when doctors do not listen to us and our symptoms. We know our bodies after having lived in them in your case for 63 years and in my case 72 years. Why is it that they do not believe us when we tell them something is wrong. Maybe you could request a visit to the Mayo Clinic to see it they can help. Best of luck to you.

Thank you for your response. Realistically I can not go to Mayo. The closest one is in Minnesota. Where I live I would go to the UW hospital. As I wrote I have been to the hospital 3 times. They run my blood work, say it's fine, and send me home. I am going to again, send my DO a message. I want her to run a M protein test.

@sallylynn I had very slight neuropathy, no other symptoms. My primary care provider said, I'm going to run the tests for Monoclonal Gammopathy of Unspecified Significance = Immunoglobulins, Light Chains, M-spike, etc. Just blood works, but not CMP, CBC nor BMP they must be more specific to MGUS. They came back slightly elevated and he referred me to a hematologist/oncologist whom I chose. MGUS is the precursor to MM. That's what you might want to ask. Once MGUS is suspected there must be a differential diagnosis to rule-out MM. Then they did a bone marrow biopsy, 24 hour urine test and a PET-CT scan. MGUS was confirmed, MM was ruled-out for now. May be time to get someone more knowledgeable to address your needs. Best wishes.

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.

I'm not a medical professional, but I do have a few thoughts based on my own experiences. I think you are right to reject the idea that the reason you are at the doctor's office is because you have anxiety. Even people with anxiety can have medical problems. In my view, your anxiety is serving you well right now if it impels you to action.

The things that stood out for me in your post were neuropathy, pain, and flank pain. Even if you have to pay out-of-pocket to get evaluated by a neurologist, I think it could be worthwhile to do that.

I had AML, I was treated for it, and I thought I was in remission. I had a relapse, but my CBC was normal. My first symptom of the AML relapse was urinary retention (caused by a very large prostate). The flow through the ureter from the kidney to the bladder was blocked for one kidney, and that caused the kidney to develop hydronephrosis. The main symptom was flank pain. An urgent care doctor tapped on my lower back on the left side and I yelped. That should have been a big red flag for them to start doing some serious diagnosing, but they did not.

Next, my energy level was slowly declining. I used to walk outside, but I gradually cut back on it. The gradual nature masked the extent of the decline and made it harder to notice (even for me).

Third, I had some neuropathy/numbness in my lower legs and hands. My grip strength and overall strength declined. Walking became hard. I fell a couple of times. I became noticeably cross-eyed. Still no diagnosis.

I saw a urologist who did a prostate biopsy. It revealed that the AML had returned in the form of a solid tumor in my prostate. Even after that my oncologist did not admit me to the hospital for treatment.

I was finally admitted after I saw a neurologist who did a one-hour-long exam, quite detailed, and she was so alarmed that she admitted me to the hospital for treatment for the AML. What had happened was that the leukemia cells had got into my central nervous system. There was an inflammation reaction which caused swelling in the spinal nerves. The nerves were compressed where they came out of the spine, and that was causing my nerve symptoms. I guess you could say it was a type of encephalitis.

I spent two months in the hospital but I did eventually improve and was discharged.

I suggest keeping detailed records of your symptoms and test results, and tracking the trends over time.

I have put together a list of sources of medical information that I think are better than simply using Google. The Mayo Clinic's website, for example, has information for patients on numerous topics. PubMed is a National Institutes of Health (NIH) database of academic papers. I will post the list of sources when I find it.

Sources of medical Information

General Information
National Library of Medicine: medlineplus.gov/healthtopics.html
For general information about a condition, use Google to search for: NIH condition-name patient education
or
condition-name patient education site:*.gov
https://www.mayoclinic.org and then select Health Library, or
https://www.mayoclinic.org/diseases-conditions
https://my.clevelandclinic.org/health/diseases

Specialized Information
https://pubmed.ncbi.nlm.nih.gov/
https://www.uptodate.com/contents/table-of-contents/patient-information/beyond-the-basics or
https://www.uptodate.com/contents/table-of-contents/patient-education
NIH produces consensus statements about many medical conditions.
Google: NIH expert consensus document condition-name

Treatment
https://www.cancer.gov/research/infrastructure/cancer-centers

The Mayo Clinic has a Symptoms Checker on its web site: https://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075

Thank you so much for your input, very much appreciated. The flank pain did go away shortly after my July 28 ER visit. My Doctor did put in for a referral to the Neurology dept. I called them twice, and they are as slow as molasses. I also told my DO I called them twice, and she said she cannot call them to rush through my "Triage" case. I can't afford to pay out of pocket, so I will have no choice to wait this out. All I am asking my DO is to dig further what is going on with me. She told me I am not showing "Symptoms" of MM, so I am guessing she is going by gauges of near end stage? to finally take notice. Who knows. I did send a My Chart message about getting the specific tests looking for the M protein so I am awaiting for her response. I do not harbor the symptoms of AML. My Symptoms as of current are neuropathy and sporadic bone pain.
I am sorry you have been dealing with so much. I hope and pray you are feeling better. I will check out all the links you shared, and that was a very kind gesture on your part, thank you so much~ I have been keeping track with symptoms and dates. I will never forget July 26. When this all began out-of-no where full body neuropaty.

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 🌺