Aerodynamically the bumblebee shouldn’t be able to fly, but the bumblebee doesn’t know that so it goes on flying anyway.
~Mary Kay Ash
Bee In Flight ~ Lisa M Johnson © 2007
As I mentioned in an earlier post…after I was diagnosed with B12 deficiency and pernicious anemia in August of 2009, I encouraged the rest of my family to get checked. But, especially my mom. She had some of the same symptoms I had, plus a few others I had not experienced that we discovered through reading and research.
Towards the end of October my mom and sister traveled 2,000 miles to visit me in Boston. I had made an appointment for Mom to see the doctor that had diagnosed me. As it turned out, she was also B12 deficient. Which wasn’t surprising to me given some of the research I had done. My mom also takes medication for hypothyroidism, and I had read that this could be directly related to the B12 deficiency.
Side Note: I seem to find conflicting information on what is considered the normal range of B12 and what is considered low or ‘deficient’. The results of my initial B12 blood test was in the low 200’s pg/ml (picograms per millilitre) – I believe it was 206 pg/ml. My mom was just a bit higher than that, around 220 pg/ml. My doctor considered those levels very low and ‘profoundly deficient’.
My mom was only visiting Boston, and of course would not be able to take treatment 2,000 miles away. So they sent her the paperwork with the results and the prescribed regimen of B12 injections as well as a new prescription for her thyroid medication. (My doctor in Boston felt her thyroid medication was being mismanaged, and she wasn’t getting any benefit from what she was currently taking.)
Upon returning home, my mom made an appointment with her regular doctor to start the B12 injections, and they refused to treat her!?!
Are you kidding me? Really?
Her doctor confessed that she didn’t know much about B12 or B12 deficiency and she would have to read up on it. Meanwhile, she would be willing to give her one injection a month.
WHAT? SERIOUSLY? She has her test results in hand and written notes from the doctor herself.
This is what makes me angry about the medical community. It’s more profitable for them to treat the symptoms instead of finding out the cause – and the hard part was already done by my doctor in Boston! Hello! But I digress, as this subject could be a post entirely on its own, and it wouldn’t be very productive since the content would be venting and loaded with personal opinion.
My blood was boiling as I began searching other doctors in the area. She has to get the right treatment, or it’s not going to do any good. My search was quickly stalled after I realized, ‘how do you find a B12 doctor?’ Googling ‘B12 doctors’ obviously doesn’t return any relevant results. There are no listings for doctors who specialize in B12 deficiency or pernicious anemia.
As I write this posting today, I am still on the hunt. My game plan now is to get recommendations from friends who think their doctor is groovy, and start making phone calls and see if they would talk to me on the phone about their experience and knowledge about the subject. If that doesn’t work, making appointments with a few of them and talking face-to-face, but I’m afraid that could turn quite costly paying for several office visits. Since I am currently living in the same city as my mom, I also need to find a B12 knowledgeable doctor, so I can get a checkup as well. If that doesn’t pan out, maybe contact neurologists? I don’t know. If anyone has a recommendation on this, please feel free to post. I’m all ears.
I think this is one of the reasons why B12 deficiency is commonly misdiagnosed or not caught at all. Testing for B12 is not a standard test done in a blood panel from my understanding.
B12 deficiency is a serious thing. It is frequently misdiagnosed for dementia, Alzheimer’s, MS (multiple sclerosis) and other disorders that cause permanent neurological damage. I would think a doctor who treats patients for these type of disorders, would rule out B12 deficiency before moving on with other treatments. I know there are other factors to consider and doctors have a big job of taking good care of their patients, but to me that would be the first thing to look at.
Pernicious anemia is a hereditary autoimmune disorder. My maternal great-grandmother suffered from Alzheimer’s, as well as my maternal great-aunt (both who have passed away), and now my maternal grandmother, who is still living. Both my mom and myself have been recently diagnosed with B12 deficiency and pernicious anemia. I seem to see a pattern here?!?
My next goal is to get my sweet Grandma Edna into a doctor who would be willing to test her and possibly treat her if it is such the case that she is deficient as well. I’m not sure what effect that would have on her in her stage of Alzheimer’s. I have not done any research or reading on that. Also next on the list. If anything, it might improve her quality of life and make her feel healthier and happier? It makes me sad to think that she may have suffered all those years, dealing with similar ailments and feeling the way I felt, and her doctors never considered testing or ruling out B12 deficiency. Especially when she started losing her memory and the dementia was prevalent. I don’t know if that’s true, but I hope to find out soon.
My experience has proven to me that we all need to be knowledgeable as possible about our health and not be passive. We don’t always get the best care from the medical community. Things are missed. They are human. But, in some instances, we have to fight tooth and nail every step of the way to even be treated correctly. Or even be treated at all.
This truth hit me hard after I spent the afternoon with a good friend of mine who has a 4-year old with cerebral palsy. We had lunch and then I went with them to an appointment at a local children’s care facility. She was telling me stories of several instances where her son’s OT therapist missed scheduled appointments at his school, with no rescheduling. Not just one or two; but 6 out of 8 of the last appointments – breach of contract. Of course the OT management heard about this in a loud way from my friend. She confessed she hated to be labeled as ‘that Mom’ who everyone cringes when they see her coming. But she hit the nail on the head when she said, “but If I don’t look out for him and micromanage every part of his life and health care, no one else will. No one else gives a damn.” I said, “amen sister!!!”
The B12 Chronicles 