During my Facebook Live session earlier today (Follow Foggy on @FoggyDog to catch future ‘live’ sessions), I said I’d be interested to receive personal M.E stories from a wide range of patients. I specifically included those people who believe they may have been misdiagnosed with M.E.
Shortly afterward I received a message from a Foggy Follower called Libby, she said –
‘I’m sitting on the fence about my M.E. In July last year I was diagnosed with Pernicious Anaemia. I am now being treated with B12 injections. I have had to source my own as well, as the NHS don’t treat frequently enough to reverse nerve damage. I still get PEM when I have done too much, but an awful lot of the symptoms cross over. My GP says I still have M.E. I now think it’s a waiting game and it will take years for me to know for sure, as that is how long the B12 injections are going to take to reverse all the symptoms that are reversible. On a couple of support groups I’m on, quite a few people have M.E and Fibro diagnosis before P.A. diagnosis. A lot of them are now questioning the previous diagnosis as they, like me, are getting a lot of improvement with the B12 injections. I even saw a neurologist and she said it was M.E I’ve likely had P.A since I was a young child, but you don’t seem to be tested even if you show all the symptoms and are in a wheelchair! I had to ask for a test. I have also noticed on my M.E support group, that a lot of people with M.E have P.A as well, so it may be worth publicising that, as it does improve some of the symptoms. Sorry for the essay, I think its something people need to know about in the M.E community’.
Pernicious Anaemia (P.A) isn’t something I know anything about so I asked Foggy’s Followers on Twitter for their thoughts about this.
Tweet said – ‘Pernicious Anaemia. Who has a M.E diagnosis with a side dish of Pernicious Anaemia? Are you wondering if you do not have M.E? I have been contacted by a Foggy Follower who is now doubting her M.E diagnosis because she feels ‘better’ with B12 injections.’
I know that some M.E patients feel great benefits from vitamin B12 injections so I know it’s ‘a thing’ but I didn’t know about P.A. Over the past 13 years, I have asked various GPs if I could have my vitamin B12 level checked but my request has always been refused. I have no idea if doses of vitamin B12 would improve my symptoms or not.
Here are a few of the responses I received from M.E patients on Twitter –
- I actually have hypochromic microcytic anaemia, small pale red blood cells, with no known disease or cause attached to it, iron is fine. I’ve had this maybe my whole life, but I assume contributes to bad oxygenation generally. I don’t think this is M.E specific.
- ‘Not much help but my story. I don’t have pernicious anaemia. Many years after my ME diagnosis, I got a weird burning sensation in my foot, tests showed slightly low B12. I had injections for many years, and noticed no difference in my ME – the burning did eventually resolve.’
- I developed ME at some point during the years I was battling anaemia due to menorrhagia. I was attributing all the symptoms to the iron deficiency. I had a hysterectomy, was great for a couple of months, and then back to square one.
- I was tested for pernicious anaemia and celiac disease and was negative. PA is not just being low in B12, it is caused by impaired uptake of B12 due to lack of intrinsic factor in the digestive system.
- I haven’t been diagnosed with P.A but I have low B12, low enough to warrant B12 injections every 3 months. They do make the fatigue easier to deal with for a few weeks, but still get the other symptoms I have with M.E. if I over do it I still get PEM . I feel you can have both x
- I get B12 injections for my ME and not for other reasons. It’s very helpful, even without B12 deficiency in blood draw. I “got my brain back”. One theory is that B12 doesn’t pass through blood-brain barrier as efficiently and adding extra helps with that. Low risk to try.
I was also sent these two links – thanks Louise. Take a look if you want to read up further on Vitamin B12 and M.E.
https://www.martynhooper.com/2018/02/10/chronic-fatigue-syndrome/
My own thoughts on this, after seeing the responses above, is that we know M.E patients are susceptible to vitamin B12 deficiency. I’ve heard anecdotal evidence from patients for years that they felt ‘improved’ for a while following vitamin B12 injections. However, one key point that I want to pick up from Libby’s message is that she still experiences P.E.M. As that is the key defining characteristic of M.E, I would guess that she still has M.E. I’m not medically trained though! I’m very happy to see Libby feels great improvements after her B12 injections and hope she continues to see improvements.
While we wait for our beloved diagnostic test to come to fruition I’m afraid misdiagnosis will remain common. However, I feel that if a patient experiences Post Exertion Malaise it’s hard to see how it can be a misdiagnosis. Don’t forget, many patients experience a whole list of different conditions that have a wide range of overlapping symptoms. Unfortunately, many conditions simply become symptoms of M.E – I’m wondering if P.A could be one of those conditions.
Love Sally
And Foggy OBVIOUSLY.
xxxxxx