You Have Ten Minutes

It’s nearly 10:30 the day after a bank holiday in the UK and already I’ve taken two calls on the office phone (not the telephone helpline) from two ladies whose story is, sadly, all too familiar to me.
The first was from a lady whose mother was been diagnosed as having Pernicious Anaemia just three weeks ago. Her aunt was diagnosed a few years ago. This lady has all the symptoms – “I fall asleep while reading and I can’t think straight” but her B12 levels are just above the threshold to determine any deficiency. The picture has been clouded further as she has been taking multivitamin tablets that include B12 for a number of years in an effort to alleviate her symptoms which includes numbness and pins and needles. All I could suggest is that she prints out the Update for Medical Professionals leaflet in the members section of the website. She has just joined.
The second was from another lady who has a lot of the symptoms, has a family history of the disease, has numbness, pins and needles and ‘terrible brain fogs’. Her serum B12 reading is just 120pg/ml. This then, is a classic case of B12 deficiency. However, her doctor has told her that ‘new guidelines’ state that the reading has to be below 80pg/ml which is not only worrying but is probably a lie. Again the patient has the first signs of serious nerve damage and is stumbling when walking. There is some hope however, “tomorrow I’m going to have my Intrinsic Factor Antibody checked” she told me. Now why would the clinic want to check her IFA if her B12 was, according to them, normal?
It’s still only 10:30 and so there’s every possibility that I’ll take another call soon. And it will probably be the same old story.
Now – about that post heading. At 2:30 this afternoon I have an online meeting with a group of neurologists to discuss, yes, you’ve guessed it, the problem with patients being undiagnosed and developing nerve damage. I have secured, after many years of trying, a ten minute slot to put across my message. An! I hear you say, ‘ten minutes is nowhere near long enough to discuss the problems with the diagnosis of low B12 and Pernicious Anaemia’. But is is plenty. You see, I am not going to go into the details of the problems. As a representative of a patient group that is not my job. What I have been invited to do is to ‘raise awareness’ of the issues surrounding the diagnosis of PA. And raising awareness will, and I’ll be keeping my fingers crossed for this, be the beginning of a discussion that is already happening with other doctors.
That ten minutes will be my opportunity to make neurologists aware that there are thousands of people being referred to them with neurological issues that may be caused by low B12. And that they need to be aware that the most common test to determine the B12 status of patients is next to useless. It will then be up to them to start the conversation whilst I quietly slip away after assuring them that I will be happy to discuss this further at some other time.
Ten minutes may not be long enough to engage in a wide-ranging discussion about the diagnosis and treatment of patients with PA and neurological damage, but it is adequate for me to just raise awareness of this.
Wish me luck!