Personal Story

Jill, Minnesota USA

Alison
I’ve been trying to figure out how to write my personal story about my journey to a diagnosis of Pernicious Anemia, but It’s long and complicated. This is an abbreviated version of my experiences but sharing it will hopefully help others.

I’ve been ill so long, starting from the age of 6 when I first started having odd symptoms until I was finally diagnosed at 51.

As a child, my first doctor thought I had juvenile rheumatoid arthritis due to my joints swelling.  He also identified Raynaud’s phenomenon, continual nausea and a family history of these issues.  I was told to take aspirin for the pain and swelling and there was nothing else to be done. When the gut issues grew and fatigue began in earnest at 17, the doctors ran some tests but didn’t come up with a diagnosis. At this point they started telling my mother it was just that I was sensitive and easily upset.
 
Soon after, I was diagnosed with anemia, iron deficiency and mononucleosis. They gave me an injection and sent me on my way. No mention of retesting any bloodwork. By this time, I was quite thin and diagnosed with anorexia. Once this happened, I started to believe my symptoms were all in my head. The doctors would say I was ‘unstable, sensitive, crying out for attention’.  I eventually ended up in an eating disorder clinic. When I got there, I knew there was something wrong with the diagnosis, because I knew I just didn’t belong there. I wasn’t deliberately trying not to eat. Instead, I was rarely hungry and often nauseated.

The next decades, I struggled. I rarely seemed to have the strength I needed.  I was on bedrest my full pregnancy because I couldn’t keep any food down and also had preeclampsia and prenatal diabetes.  It didn’t end there, the symptoms just kept coming—gastritis , migraines, chronic infections, thyroid problems, chronic fatigue, fibromyalgia, iritis, a bone break in my femur with no trauma, menopause at 40, osteoporosis by early 40’s, knee replacement at 49, asthma, insomnia, chronic gut issues, eczema, urinary issues, breathlessness, constant pain and the loss of my words. I felt like I was dying, a little bit every day. And apparently, I was.

I have been to so many specialists over the years: GP’s, internists, rheumatologists, allergists, gynecologists, gastroenterologists and others. Some were clearly just going through the paces. Others would be enthusiastic and have ideas to test for, but nothing ever came of it, except odd diagnoses and medication that would make me even more sick than before. They would say the tests were mostly normal but in the 80’s, 90’s and early 2000’s I never saw the actual results. Once it became common to be able to view your tests online, I would question why they didn’t address that some of the numbers were out of range, both high and low.  But the doctors always said the numbers weren’t ‘enough’ out of range. By the time I was in my 40’s, I knew the symptoms weren’t in my mind. I was ill. I researched every disease I heard of, but the symptoms were common to so many different conditions. The only thing my doctors agreed on was that I had an autoimmune disease.
 
I tried natural medicine, chiropractors, homeopaths, and various home remedies.  Although some things seemed to help a tad, nothing made a real difference. This was a challenging route since most of these choices weren’t covered by insurance.
Often, I was told that if only I exercised I would feel better in body and spirit. So it became a priority. I walked miles, tried kickboxing, swimming, Karate with my son, running on a treadmill, biking, elliptical, yoga and hiking. If it was the only thing I could physically do in the day, I worked out. I felt like I was moving through sand.  It was so challenging, but I kept trying. I never felt better after working out. Instead, I was even more achy, swollen, nauseated and exhausted. After surgeries I was told that walking is healing, so I walked and walked, repeating the phrase with every step. My only gift was a stubbornness that knew no bounds. Yet no matter how exhausted I was, I couldn’t sleep, which compounded my issues.
 
After about the 4th or 5th gastro specialist I decided I couldn’t be helped by doctors. It was time I just struck out on my own. I cut out wheat, dairy, and most sugar, eating essentially no processed foods. This seemed to help the gut issues a little. I tried supplements but they either had no effect or made my condition worse. I was struggling through every day at this point—lying down, getting up to do one chore then lying down again. On repeat. I was breathless halfway up one flight of stairs, and I could no longer walk even a block.

After reading a novel by Edith Wharton, I decided to read her life story. In her biography, she mentions someone she knew who was dying of Pernicious Anemia. The description seemed familiar and I decided to do some research. Every report I read made me think, ‘This sounds like my life’. I had a new goal to get someone to test my B12. This doesn’t sound difficult, but I found it was.

My first test result was 230, which my doctor said was normal. The second test a year later was 213. Neither test was done while I was fasting which is advisable to get an accurate count. I decided to try the Mayo clinic. The internist I saw was dour and dismissive when I came in and told me that auto-immune diseases were difficult to determine and he didn’t have much hope he’d have any new answers. I told him my B12 level seemed to be low, and he rolled his eyes and said they would check it. I went through an expensive round of tests in multiple areas of the medical departments and was exhausted. My fasting blood tests came in and my B12 level was now listed as 155. Finally, it tested below any level they could say was normal! On my last visit the doctor’s personality completely changed. More enthusiastic, he gave me a B12 injection and told me, now I was going to feel amazing. After the appointment I was told to take oral B12 and I would be fine. He would not run an intrinsic factor or anti-parietal cell test because, of course, I couldn’t possibly have Pernicious Anemia (so he thought).

I did feel better after the injection, not great but better for a day. Unfortunately, it didn’t last and the over-the-counter B12 made my stomach hurt worse. After trying to communicate with the doctor, he sent me a note saying I should just take the pills and when my level reached 400, I would be fine. By now, I knew in my soul I had PA. No one would dissuade me this time. I needed to find someone who would listen to me and help.

I found a naturopath that gave B12 injections. She was willing to run an intrinsic factor (IF) antibody test that came back positive. I had my answer! When I got my results, I was shocked at first and then I cried. Finally, at 51 I had some answers. Years ago, a doctor once said to me, “But you don’t want a diagnosis, do you? You don’t want to be sick.” No, I didn’t want to be sick, but I was sick. For decades. Often unheard, unseen, unbelieved. I had friends and family who didn’t believe I was ill, because how can you be ill if doctors can’t diagnose you?

I’d like to take a moment to talk about injections for B12. The dosages recommended by ‘conventional’ medicine often fall far short of what patients truly need.  While trying to figure out my own protocol I tested a lot of ideas. With PA there is no test to tell you when you need the next injection and every patient I’ve met has had a different method that works for them. I found that closely monitoring my symptoms was the best way to find my best health. During Covid, I was occasionally unable to get my B12, and it was very disheartening to go back to the symptoms I originally suffered with and making the symptoms I still had worse again. I believe it is necessary for the patient to run their own protocol. It shouldn’t be made more challenging by the medical field or insurance companies, but that is another story I could tell.
 
Hope. It’s a hard thing to still carry after so long, but it’s there. Dim at first but shining brighter as the days go on. Seven years after my diagnosis, I work every day to get even better. I can walk 2 to 3 miles a day, do Pilates, and lift weights most days. I need to rebuild bone and muscles, and I find myself getting stronger. I still struggle with some symptoms, and I will have some of them forever, since the damage has already been done. Overall, I’m healthier, happier and more resilient for which I’m grateful every day. I still have setbacks, but now I have more knowledge to help regain my health.

Unfortunately, my story is not unique and it’s still challenging to find doctors who understand and treat the disease. I’m grateful to the Pernicious Anaemia Society, located in the UK, along with their US Support group. The research and education for patients and doctors alike is invaluable.  The webinars have given me information I’ve never found elsewhere, and that has aided my understanding and management of my Pernicious Anemia. The US support group helps me to feel seen and heard.  It truly is supportive, which is often rare. I feel I can turn to the members with any question, and everyone will try to help. Hopefully as time goes on, I can return the support to others that are trying to find answers to their chronic illnesses.

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