About 7/8 years ago, I was diagnosed with ME. It was a huge fight to get a diagnosis - I had three iron tests which all came back normal (yet the GP insisted I must be iron deficient), the next doc told me I was suddenly unfit (despite doing sports five times a week), and the next told me I had "Monday morning syndrome", followed by referring me to a paediatrician at the age of 17 as they would be "more sympathetic". Of course the paediatrician refused to see me as I was too old, so I ended up having to go private and see a neurologist. I had a brain scan which showed nothing and was diagnosed with ME.
The last couple of months, I've been having pins & needles in my hands and face, and shooting nerve pains in my right arm. The doc I saw tested my B12 amongst other things. The only results I've got are that my B12 levels are abnormally low and there's something up with my blood count too. I can't get more answers til I see my GP next week.
I want to know a few things if possible. Reading up on B12, I'm realising how many symptoms I've had (for a while) that fit with B12D/PA. I have next to no sense of smell, I'm massively fatigued, I'm tired all the time, there's the nerve pain, and the mood swings etc. I've been blaming all of this on a combination of the ME and odd things that happen when you're pregnant/have babies.
So is it possible that I've had B12D this whole time and it has been getting progressively worse, and I never had ME (I don't think my B12 was ever tested)!? Or could I have both?
Also - what are the next steps with my GP?- can I expect more blood tests or will I just be put on injections or something (I'm in the UK)? Will I ever get my sense of smell back, will my moods even out and the mind fog go, and will the nerve pain stop? Which aspects of it are likely to be permanent? Thanks
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emtwse
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You would not be the first one to have had allsorts of diagnoses before it all came down to B12 def. Anyway the best thing you can do is to learn as much as you can about PA/B12 def and get copies of blood tests so you can see what has been tested and what not etc.
There is a huge overlap between symptoms of PA and a number of other conditions so it is quite possible that it was B12D all along - but also quite possible that it may have been both - patients with ME and MS can respond quite well to B12 which may be because there was misdiagnosis but could also be down to the fact that addition B12 helps with some of the processes that aren't working and improves things a bit.
B12 is used by the body for
cell reproduction - so deficiency linked to anaemia, cancer etc
maintaining the lining around cells - so deficiency is linked to neuropathy, psychiatric problems,
lethargy and muscle weakness could be result of either or both of the above
B12 is also used to recycle some harmful products MMA and homocysteine - back into useful products - homocysteine is linked to cardio vascular problems.
Unless your diet lacks B12 (strict vegan with no supplementation) it occurs because the normal mechanism your body uses to absorb most of its B12 goes wrong. Autoimmune responses are one possibility - PA proper - so worth asking around the family to see if you have any relatives you have PA
Other possibilities include gastric surgery, genetic abnormalities in the ileum and, unlikely given your age, changes in acidity as you get older.
You use up more B12 if you are physically active or under a lot of stress so the fact that you do a lot of physical activity may have contributed to things getting bad quicker. Ironically sports coaches and trainers are often more aware of B12 than most medics.
In UK normal treatment would be injections - though hit and miss as to whether the frequency suits you - many people need more than the guidance says.
However, they are confusing because focus is on anaemia and actually the neuropathy can develop without anaemia. As you have symptoms of neuropathy the recommendation is loading shots until symptoms stop improving followed by maintenance shots every 2 months.
Your GP may want to do IFA test (to narrow down cause to PA) but it isn't a particularly accurate test - only 50% so negative doesn't necessarily mean you don't have PA.
PCA is out of favour in the UK - but if your levels are abnormally low then really you should be starting treatment ASAP. There are tests - basically looking at the waste products that build up if your B12 is low but not 'abnormally' low - MMA and homocysteine but it sounds as if neither of these is appropriate in your case as you aren't in the grey area.
You might be referred to a haemotologist or, if wanting to narrow down causes of malabsorption, a gastrology specialist.
Pregnancy and breast feeding is another time when you need and use lots of B12 ... and B12 is very important for your child so please make sure that they are getting enough B12 - one thing I found very interesting is that microwaving milk adversely affects B12 in the milk.
It is impossible to say that all of your symptoms will disappear or even which ones will disappear as people vary so much in their responses to B12 treatment, and it may also be affected by underlying ME if that is present.
When I got my levels right for me the worst of my symptoms disappeared in 2 weeks - my moods stabilised in a few months (about 4 decades of depression and anxiety). I still have some problems with tingling and my tinnitus hasn't disappeared ...
Great info from Marre and Gambit. It sounds from what you say as if it might be B12 Def rather than ME, which means it would be treatable with a better chance of recovery. So good luck with your GP response and treatment.
hi emtwse. sorry to hear you're having such a difficult time with the PA/ME. however, with b12 treatment you'll feel a lot better all round. it might take a while for the full effects to be felt, so be patient.
in respect of your question: it's difficult to say whether the symptoms u outlined are caused by ME or PA or both. many of the symptoms do overlap. as u know there are no definitive ME bio-markers. so diagnosis can be arbitrary. as u know, it's a bit of a trial & error approach to treatment. i have both ME & PA.
many ppl with ME also have low b12, low folate, low vitamin d & low thyroid levels. however, since i started b12 treatment, many of the symptoms that i attributed to ME have cleared up: facial nerve pain, numb toes, anxiety, depression, mood swings, mild dyslexia to mention a few. i didn't have dyslexia before the ME. now i believe that the dyslexia is a symptom of b12 def. rather than ME related. many of my ME symptoms have massively improved with b12 injections: fatigue, muscle/joint pain, brain fog, concentration, focus, severe IBS, headaches, fainting & collapse etc. my guess is, that once u get your b12 def., treated you'll know if the original symptoms were caused by low b12.
i have had to experiment with getting the right b12 levels and right dose for me. as someone else has pointed out, b12 treatment & response is unique to each individual. ppl with ME need very high levels of b12. in fact b12 is used as cornerstone treatment by some ME experts.
it's important that you have your folate levels checked before u get started on your b12 injections. if it's low you'll need treatment. this is important as folate & b12 are interdependent. if one's low the other wont work optimally. in fact it's important to keep your 'ferritin' levels and HB in the upper normal ranges. so it would be a wise to have them all checked out & know your baseline levels of each. hope that's useful and all good luck with the treatment.
My vegetarian relative, at one point in a wheelchair, was told for years that she was suffering from ME and early symptoms were severe fatigue, difficulty walking and loss of smell, eventually leading to neuro/psychiatric symptoms. After a long battle with her surgery, B12 injections made a remarkable difference, although her memory problems still not completely resolved. Personally I believe many people are wrongly diagnosed with ME, doctors not taking a proper case history, often missing B12 deficiency and only looking for anaemia.
Good for you in researching this condition, especially as you've been told your B12 is abnormally low. It looks as though you should now be treated urgently on the neurological symptoms you have to avoid irreversible damage, This site gives information and advice on how to write to your doctor:
It might also be worth including latest research BMJ document or the summary, if you don't think the whole document will be read, especially as it particularly mentions that B12 deficiency can manifest without anaemia:
* Vitamin B12 deficiency is a common but serious condition
* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.
* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."
* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.
* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.
Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.
It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."
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