Hi everyone. My medical adventures have been ongoing for years but, like many others, I have struggled to find a definitive diagnosis for my symptoms. My spouse is the only person I've shared all this with. He's been by my side and supportive throughout numerous doctors shrugging their shoulders — and long periods where I give up before trying again to tell a doctor something is wrong. Recent test results are finally pointing my new doctor and me in logical directions. I'm grateful for the chance to figure out what's been happening to me.
It's been a frustrating, lonely road. I'm posting here today to say hello. To connect. To share some of my journey in hopes it might be useful to others. Some symptoms go way back, but might not be related to pernicious anemia (PA). Today, after new test results came in, I asked my doctor to help me rule out autoimmune atrophic gastritis (AAG). If it's not that, it seems likely to be PA. Here's my story.
Possible neuropathy:
Wrist pain started when I was a teenager. Whether due to wear and tear (athletics + restaurant work) or autoimmune issues, it has gotten progressively worse over time. At first the pain only came with activity: computer use, work, etc. Then the pain became constant, with activity causing sharp stabs that made me afraid to grasp anything too tightly. My medical records show that I asked doctors to help me figure out the cause of my wrist/forearm pain in 2011, 2016, 2019, and now, again, in 2022. At first, I was told I was "too young" for chronic pain. Then I was instructed to wear wrist braces, which I did (and have been doing for over a decade). One doctor referred me for an EMG nerve test to rule out carpal tunnel syndrome; the EMG came back normal. My wrist symptoms were diffuse and confusing. In 2016, a doctor squeezed my arm and identified lateral epicondylitis ("tennis elbow") in both elbows, which likely contributed to my wrist pain. In 2019, a doctor added medial epicondylitis ("golfer's elbow") to the list. But rest, ice, compression, and physical therapy never made the pain go away. I took NSAIDs regularly.
And only now, in 2022, did a doctor refer me for an MRI. The left wrist only.
November's MRI of my left wrist showed inflammation of the flexor tendons ("to the sheath") and extensor tendons (tenosynovitis), with degeneration of the scapula-lunate ligament (between two wrist bones) and cartilage softening (chondromalacia). I can't tell you the relief to finally have my experience validated: a scan *finally* showed something that would explain my chronic pain. No more getting dismissed due to my age (I'm in my mid-30s now) or gender (female) or due to my failure to fit nicely into a specific box of symptoms.
My MRI results don't yet explain the origin of these wrist issues. The pain could be due to nerve degeneration (related to neuropathy/PA), which has led to chronic irritation/inflammation, which has created this constellation of issues. But maybe not. I have an MRI on my left elbow scheduled December 20th to learn more — and to confirm the prior diagnoses of bilateral epicondylitis and medial epicondylitis.
Other PA-related symptoms that go way back: depression, sleep disturbances, brittle nails, fatigue, anxiety, dizziness, heart palpitations, and digestive issues. I'm going to focus on the latter.
Digestive issues:
As a kid, my parents always said I had a "sensitive stomach," and I experienced nausea frequently. In my late teens, I started to notice obvious appetite issues but dismissed them as a combination of restaurant shift work and anxiety. In late 2014, a barrage of symptoms related to my abdomen sent me to the doctor repeatedly to try and figure it out. To be fair to doctors, it was a confusing array of issues. I had multiple abdominal pains happening simultaneously.
- In 2008, I started having disruptive symptoms (aching/pain) in my lower abdomen that — after years of testing and doctors shrugging their shoulders — led to an endometriosis diagnosis in 2021.
- And in 2015, cervical dysplasia was found (CIN2; HPV16), which required a LEEP to remove the precancerous cells.
- So when I began losing weight and being unable to finish meals (early satiety) in late 2014/early 2015, it wasn't clear that these new upper abdominal symptoms could be unrelated to the as-yet undiagnosed lower abdominal issues.
I went to the doctor in 2014, 2015, 2017, 2018, and again now in 2022, repeatedly trying to explain that something was wrong in my stomach. I experienced nausea frequently. I had no appetite, and when I did, I would sometimes eat just a few bites before feeling "full" (early satiety — or just too nauseous to continue eating). I had frequent acid indigestion and burping.
In late 2014, the doctor shrugged and prescribed me omeprazole. In 2015, an abdominal Physical Therapist identified that I had mid-epigastric tenderness and pain: when she pressed right below my sternum, it felt like a punch to the gut. I was immediately sick to my stomach. This sensitivity has never gone away.
In 2017, a doctor discussed diet with me. I was taking NSAIDs fairly often because of the wrist pain. So I cut that out entirely; no more pain meds. I cut out dairy. Orange juice. Coffee. Things that obviously impacted the acids in my stomach. [Edit: I had stopped taking the omeprazole sometime in 2015 after it didn't seem to be helping; this doctor told me to start again.] She also tested me for h. pylori bacteria, as a potential cause for my stomach issues. This test came back "negative" but was technically positive for antibodies, indicating a prior infection (result: 2.1 U).
Two months after the diet discussion, I had an endoscopy of my esophagus and stomach in September 2017. It showed all normal results and normal biopsies (including a test for active h. pylori, which was negative). The only noted abnormalities were: "Gastric mucosa with reactive gastropathy and patchy mild chronic inflammation" and "Squamocolumnar junctional mucosa with reflux-related changes." So, inflammation and irritation, essentially. But these observations weren't major enough to warrant much follow up. I stopped taking omeprozole again (since it still didn't seem to help), and I tried one more time in mid 2018 to get help from my doctor. But, as it often goes, the doctor ran a few blood tests (CBC, BMP), results were normal, and that was that.
New doctor, new tests:
Like many others here, I have been fighting to get doctors to hear me — and to keep looking when test results are normal — for over a decade. In late 2019, I got new health insurance, which resulted in a new primary care physician. For the first time, I was paired with a doctor who was keen to work as a partner in my care.
This doctor listens when I explain an issue. She doesn't dismiss me when I share a factoid from something I read — she asks me for the source and I send it to her (and it is almost always a study or article from the from my government's National Institutes of Health or the National Libraries of Medicine, here in the U.S.). She admits when she isn't sure about something, and she has sent multiple requests for consultation to her more specialized colleagues. It has been amazing to have a doctor speak to me like a collaborator rather than dismissing me like a child. And it has led to results.
Last year in 2021, after over a decade of symptoms with medical records going back to 2012, I finally got an endometriosis diagnosis. (Yes, it requires surgery to diagnose [laparoscopy], and yes, I had multiple abdominal issues, which made this whole thing tricky for doctors. I get it. But it's a disease that is as common as diabetes. I am frustrated that it took so long to figure this one out, especially when it was at the top of my list of "4 potential causes" when I first went to a doc about my aching uterus in 2012. Alas.) My doctor advocated for me within a medical system that doesn't like when patients advocate for themselves.
Her ability to hear me and get me the (logical) referrals I was asking for has led to results. After years of uncertainty, we're figuring things out. Earlier this year, I wrote out my history of wrist symptoms — all of which are recorded in my medical records going back to 2011. My doctor promptly referred me for imaging and connected me with a sports medicine doctor who (luckily) also wanted to collaborate on my care rather than control it. This led to the MRI — to results. Finally.
Which leads me to my current quest: figure out my stomach issue.
B12 deficiency:
In July 2022, I collapsed/fainted (syncope). This has never happened before, though I did have something close happen in 2011. This summer's collapse led to 3 months of tests to try and figure out what happened. My Apple Watch was showing odd heart, O2, and respiration rate readings. But blood tests, holter monitor, EKGs, and an echocardiogram all came back normal. I had been having heart palpitations since at least 2011 — and definitely since 2014 (my first EKG) — but collapsing to the floor, being unable to move and unable to yell for help was... terrifying. It revitalized my desire to figure out what the heck my body was doing.
But all those heart tests came back normal. My doctor recommended a sleep study; I was intrigued, given that I've had chronic insomnia since childhood, according to 3 decades of journals. But the sleep study and EEG came back normal, too. I was confused. Something had happened in July when I collapsed. Something was happening — had been happening for years.
So I started researching my main symptoms again: wrist pain, digestive issues, heart palpitations. This research led me to a handful of possible factors that might be causing *all* of my symptoms. Maybe these were all connected: maybe my wrist pain and my digestive pain and my heart palpitations aren't separate. They could be symptoms of a systemic issue. Maybe.
So on November 22, 2022, I asked my doctor to test my B12 levels and TSH. The B12 symptoms matched a lot of my (lifelong) experience. And my biological mom had hypothyroidism, so perhaps the Thyroid-Stimulating Hormone blood test would reveal an answer. The results came back.
B12 (cobalamin): LOW
114 pg/mL (normal range: 180-914 pg/mL)
B9 (folate): ELEVATED
17.9 ng/mL (normal range: 3.1 - 17.5 ng/mL)
B6 (pyridoxine): NORMAL
7.3 ng/mL (normal range: 2.1 - 21.7 ng/mL)
TSH (thyroid): NORMAL
1.25 uIU/mL (normal range: 0.3 - 5.5 uIU/mL)
She explained that the cause of my low B12 could be diet, malabsorbtion, or both, and she offered B12 oral supplements or injections. Having read about all this, I chose injections, given the ongoing stomach issues.
But — although I really like my doctor — I was frustrated that her response to my low B12 was "here's a fix" and that was it. A fix is great, but what *caused* this issue?
I outlined my history of abdominal symptoms and my theory that my B12 might be autoimmune in nature. I laid out my case. My low B12 is likely not diet-related: I'm not vegetarian and not vegan. I do have appetite issues — I have for years — so I can't fully rule out diet with full confidence. But "poor diet" fails to include the barrage of stomach symptoms I've had since 2014. Whereas a theory of AAG (or h. pylori induced EMAG) ties my low B12 to many of these other symptoms.
Since B12 and my litany of symptoms seemed to align with pernicious anemia or autoimmune atrophic gastritis, I requested testing to rule them out.
A doctor covering for my doc dismissed my pernicious anemia theory off hand, citing my recent blood work which did not show anemia. I ignored him and wrote a source-cited message to my doctor, outlining all the variables. And I pointed out that different hospitals/labs/studies use different thresholds to identify signs of anemia — some of my CBC levels never fall into the "low" range that my hospital would flag, but they have consistently fallen into the "sub optimal" range that other labs will flag. I provided .gov links to the data I was seeing.
On November 28, I had another blood draw for testing. The results have come back:
Homocysteine: NORMAL
9.5 umol/L (normal range: 4 - 10 umol/L)
Methylmalonic Acid (MMA): HIGH
382 nmol/L (normal range: 87-318 nmol/L)
CBC with PBS: NORMAL
No blood-count measures were below normal, so the Peripheral Blood Smear was automatically cancelled. (A bit frustrating since features of anemias can "hide" and return normal results if you have multiple things going on — or multiple types of anemia. Alas.)
Intrinsic Factor Antibodies (IFA): NEGATIVE
negative (normal result: negative)
Parietal Cell Antibodies (PCA): POSITIVE
35.8 U (normal range: below 20, negative; 20-25 equivocal; above 25, positive)
When I saw the PCA result this morning (December 7), I again felt validated. Yes, we're getting somewhere now. Finally. After years of stomach issues, now we can point at something and say, "Here's why!"
But since the IFA result was negative, we haven't confirmed pernicious anemia. Only 50-70% of folks with PA have a positive IFA test, so we haven't ruled out PA either. So it seems we need to rule out autoimmune atrophic gastritis to spotlight PA. I also expected my homocysteine to be higher, given the heart palpitations and the length of time that I've had symptoms. But I guess the heart-related symptoms remain a mystery.
Today, I sent a message to my doctor, requesting the following tests — all but 1 is a simple blood test:
Rule out autoimmune atrophic gastritis (AAG):
• pepsinogen
• gastrin
• and an endoscopy (gastroscopy) — I had one in 2017, but I have continued to have chronic inflammation in my stomach since then, which may have now led to more significant digestive tissue problems.
ar.iiarjournals.org/content...
Rule out rheumatoid arthritis (RA):
• erythrocyte sedimentation rate (ESR/sed rate)
• C-reactive protein (CRP)
• rheumatoid factor
• anti-cyclic citrullinated peptide (anti-CCP) antibodies
mayoclinic.org/diseases-con...
She responded and referred me to a gastroenterology doc, who can order the tests to rule out AAG. And for my desire to rule out RA, she ordered all but the ESR, explaining that ESR was considered redundant with the CRP and is often reserved for very specific use cases.
Amazing. My doctor is helping me figure this out. After so many years!
She never acts as a barrier, but she still guides my care and aims us at logical next steps. Rheumatoid arthritis is a logical possibility to me: I've had wrist pain since my teenage years (though it could be neuropathy due to PA, or could be due to wear and tear/osteoarthritis); I have swelling/tightness in my fingers in the mornings when I wake up; my wrist doctor encouraged me to see a rheumatologist about my chronic inflammation; and I now have a confirmed autoimmune issue, thanks to the positive PCA result — and autoimmune issues often come in pairs/groups, where if you have 1 autoimmune issue, you likely have more than 1.
I also asked my doctor about getting:
• Iron panel (since we said we would check — my Ferratin measured 32 ng/mL in July after my collapse, but we didn't do a full iron panel)
• other relevant autoimmune or digestive related tests? (My paternal uncle had intestinal polyps removed; not sure if that’s relevant.)
She ordered the iron panel and we have an appointment on December 20 to follow up.
Current status:
I haven't found an answer yet. But we're getting there. And I am so grateful to have a doctor that wants to help me access relevant care and testing, not hinder me.
So often I have been faced with doctors who are objectively wrong about an issue.
- Like the doctor who told me that neither my breast fibroadenoma (benign tumor), my "extremely dense" breast tissue, my "moderate" background parenchymal enhancement, nor my two second-degree paternal family relatives with breast cancer added any additional lifetime risk of breast cancer for me. I replied to him with the CDC.gov and NIH.gov articles that indicated otherwise, and I suggested that it was harmful to provide patients with inaccurate data about their risk factors.
- Like the surgeon who told me that once I get a hysterectomy, endometriosis "wouldn't be a problem anymore." I replied with a link to the NIH.gov article describing the 4 main theories of endometriosis, only one of which is that it's caused by the uterus specifically. (There is still no consensus on what causes it, and likely won't be for many years; research for endometriosis receives just 2% of the funding as diabetes — a disease that's just as common.) I asked if, in her experience, she had never seen endometriosis return after a hysterectomy. She backtracked, citing the data from the article and saying she couldn't guarantee my endo wouldn't return.
- Like the ENT doctor that I went to about [what I'd identified as] a papilloma near my tonsil. He looked in my mouth and said, "I don't see anything that looks like a papilloma." I poked it for him, asked him to biopsy it anyway, and behold: the pathology said it was a papilloma.
Sigh. Sorry for rambling. Thank you for reading, those of you that made it this far. I know I'm not the only person who has experienced medical gaslighting, dismissal, or being provided false information. I hopefully am not the only person who has managed to find a doctor who can listen to the patient and work as a collaborator — as a partner — in their health care.
To anyone currently frustrated by their doctor's dismissal or by years of inconclusive test results, I share my story to say: keep going. Get a new doctor (if possible). Do your own research — read scientific journals and studies (skip to the "Conclusions" section for easy skimming), read Johns Hopkins, read Mayo Clinic. Follow in-text links to see what aligns with your symptoms and what doesn't. And keep advocating for your care. I *know* it's exhausting. I have given up again and again. It's okay to rest. And when you're ready, try again. You deserve quality care. You deserve more than the bare minimum blood test and a shrug from your doctor saying, "Good news: everything's normal!" You deserve an explanation for whatever symptoms are disrupting your life. You deserve to be heard.
Thank you for hearing me.
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