I think I have sciatic nerve pain, usual 12 days to my appointment. Does it go with PA, does anyone have similar, burning pain starting under foot and lack of feeling followed by pain up the leg to hip. My gp is extremely unsympathetic so I'm hoping it will go.
I struggle with jabs at 10 week intervals and that took a bit of persuasion so no use asking for more.
I'm really struggling with this disease,, there seems to be no help. I have other nerve and muscle problems.
I'm sorry to hear that you are struggling. Have you thought about trying other forms of supplementation. It also gives you the freedom to look at different formats of B12 as people can respond quite differently to different forms - many, but not all, find that methyl helps them with the nerve issues.
A lot of what you describe in terms of feet and leg pains is also quite common in B12 deficiency ...
Thank you for your reply, my gp doesn't give us a choice of jab so we all have the cheapest available. I don't have IF so no supplements work only a jab.
I'm fed up with my sleep patterns and constant tiredness but will keep going. I wasn't aware of leg and foot pain being common, hoping it will go soon.
It's good to have support as I don't know anyone that has this diagnosis locally.
Many thanks.
The idea behind sublinguals etc is that the B12 is absorbed through other membranes and not in the gut so the absence of IF shouldn't be relevant - yes taking normal vitamin supplements isn't going to work because they rely upon the normal absorption through the ileum but the supplements I'm referring to are specially designed. Also about 1% of B12 is actually absorbed in the gut outside the ileum so for some people taking really high doses by mouth can result in enough getting rhrough - ie 1mg=5mg.
Unfortunately these are products that you will need to buy for yourself - not sure where you are based - but generally restrictions only apply to B12 in injectible form and providing there are local suppliers for the other forms then you can get them locally - otherwise there are internet sources you can use. I find that nasal sprays really help me and they are much more convenient than injections as I can do them anywhere (I have a very high need as I think my absorption problems are then compounded by an auto-immune response to TCii which means that if my serum levels are high I destroy the mechanism that transports B12 to the cell level ... and the only way to beat that seems to be flooding the body with enough B12 to keep a herd of elephants going so the body can't produce enough antibodies to kill everything eoff!)
I'm guessing that you are a vegan so aware of B12D from diet but just about everyone on this site has absorption problems like you rather than a diet related deficiency.
Hi, thank you for your reply. It's very interesting information. I have tried Methyl sublingual tablets made by Jarrow, they don't seem to make any difference. Is the nasal spray an internet purchase? I have tried patches but had an allergic reaction.
I have to pace myself which annoys my family. Unless our exhaustion levels are experienced by family of course they can't be expected to understand.
I'm not vegan but eat poorly, my son knows when I need B12 top ups as I'm drawn to strange food combinations, do you have the same? Dried fruit and marmite top the bill.
I had an aunt I only met once, who died from PA effects, long before jabs were available, unable to compare symptoms with her but my cousin says she hardly went out and ate pounds of raw liver. So my gp and I think it must be an inherited problem. I also have another auto-immune disease. It's hard to attribute symptoms.
I think I'll try the Methyl again see if it helps the sciatic pain and find a nasal spray. Many thanks for your feedback.
Not sure where you are based - there are nasal sprays available in the US - mainly cyanocobalamin ... can't remember what the trade name is. I buy mine from these people - they do a range of different nasal sprays and also nasal drops (which are in oil so might be an allergy problem - took me a while to get used to them but they are really good)
you can search on B12 ... or B12 is under vitamins in the list on the left hand side.
A burning feeling in the back of the upper leg, I know well. For me, it first occurred in the later stages of B12D, before I was diagnosed PA. With frequent hydroxo B12 injections (initially supplemented for a time with methylcobalamin injections) it went away - as did the tight-stocking feeling in the lower legs (but never the discomfort in the soles of the feet, especially at night - permanent damage). I found that discomfort in the back of the thighs can become particularly bothersome in the evening, and when putting pressure on my legs by sitting.
Despite my exceptionally frequent injections of hydroxo B12, both the tight-stocking feeling and the thigh problem have a tendency to recur (in that order) in the period following any excessive exercise - and to stay with me for several months.
Also, curiously, when standing I can occasionally get a very sudden almost cramp-like feeling on the upper parts of the feet and the front aspects of the lower legs - both legs being affected absolutely simultaneously. It is quite marked and checks normal movement; and lasts for a minute or two.
If anyone has any clues on what might be the cause and the mechanism for such sudden 'cramps', I would like to hear. I did take my problems to a neurology Centre of Excellence, to be told, fairly curtly, that I had idiopathic age-related neuropathy. No explanation needed - brilliant!
Amazing how medics seem to think that labelling something explains it away 
Interesting that you mention exceptionally frequent injections - sounds like you might have problems with an auto-immune response to high levels of B12 in serum - which stops it getting through to the cellular level.
the only references I have been able to find to treating this are maintaining really high levels of B12 - my explanation is that it's flooding the body with so much B12 that the immune system can't actually create enough antibodies to destroy all the TCII so some gets through to the cells - and it sort of fits with my experience which is also high doses of B12 - but I tend to get most of mine as nasal sprays.
Exercise uses up quite a bit of B12 so it may be that this means your B12 levels dip below the level where the anti-bodies start to win again which is why you are getting the symptoms. You could try taking a little more B12 before exercising and see if that has any effect.
Hi, your neuro symptoms match mine, the cramp in the front of both legs is so painful, I usually apply Traxam available from gp. I also have severe back cramps. These usually happen at night.
The leg and foot pains are new for me, I have not overdone gardening which can affect my back.
I find it uncomfortable to sit for long periods and have tried extra cushions but just go and lie down, even for five minutes, it helps. I hope it will be of some help for you. Every day is a struggle do you feel the same?
Certainly, I have my ups and downs - but much less so since my B12 prescription was increased several years ago. Minimising stress (physical and mental) seems important, too: indeed, I was advised to rest well by a GP, who has long been fully clue-up.
As you will be well aware, PA is a serious condition, needing appropriate on-going treatment, delay in starting which can lead to irreparable nerve loss: your doctor should note!
I suggest that you do not give up with your GP. Although there is more to our problems than even the researchers who I have contacted presently understand, there is enough known of the complexities to warrant treatment on an individual needs-basis, rather than by strict adherence to the usual guidelines when they prove inadequate.
B12 injections are cheap, and generally thought to be safe to use in any quantity, with the caveat that any injection carries some risk. Some people (including me) seem to need a 1 mg injection per day. Self-injection - subcutaneous, as per diabetics - is simple and obviates health centre visits and costs. Others that I know of use more B12 than that, obtained outside the NHS.
As contributors to this site have said before, you need to arm yourself with information - including printed. I think that one problem we have is that, when you have become a little confused through chronic lack of B12, you don't perhaps present your case as clearly as you might - and consequently the doctor may be more dismissive, just when we need greater understanding. Another is that some may be under the illusion that B12 gives an energy boost or 'high', and that is what people seek. While adequate treatment does improve quality of life (from a low base), even 1mg injected per day most certainly does not have any such intoxicating effect in PA.
One last point: your doctor may feel unhappy about diverging very far from the guidelines without the backing of a specialist - most usefully, perhaps, a haematologist at a major hospital.
Keep at it.
Yes, I can identify with the age related neuropathy diagnosis. Happened to me and I know at 61, I should not be having trouble putting on my socks! I am not keen to set off on my long 6km walks because I am scared I won't make it back.
Hi there dollery..i see its been 2yrs since you wrote on here but im wondering how you are now?..they finally found 3 months ago i have low b12 it was 205 ... my symptoms started 2 yrs ago with pain in arms legs and twitching in 2016 my b12 was 325 but nothing was mentioned about b12 .. i was seen by neurologists rhumatologists. Had mri scans of spine. Ct scan emg on arms and legs bloods done all clear.. arm pain went but back of thighs have terrible burning for a long time like yours if i do any gardening or brisk walking especially sitting on the sofa in the evenings and i have prickly pain at times in the front of my thighs. No breathlessness and tremor has gone on any kind of excersize.. im 60 now and it gave me awful anxiety not knowing what was wrong for so long.. i had my first 6 loading injections in nov / december now on 12 weekly shot as im in uk.. hardly have the twitching now but have you any idea when this burning thigh pain will last for and i can resume gardening etc and not suffer the consequences!.. i do hope you are feeling better ...this seems never ending.. i do not have p/ anemia mine i think was caused by proton pumps and stress
Hi, i do not know if this will help, I have had sciatic pain in the past, I was fortunate that my doctor sent me for an MRI scan and it showed that I had slipped a disc which was causing the pain. Would it be possible to see a different doctor at your doctors practice, and see if they will give you a better diagnosis. Hope all goes well for you.
I think something was amiss with a disc, lying on the floor, don't ask how I get up, seems to have helped and I can now resume the long walks I love. Trouble is I blame all my health issues on the PA. I'm diabetic too so symptoms can easily be confused.
I hope your back problems are resolving.
how long does nerve pain last?
Left sided nerve pain
Trapped nerve/ shoulder pain
nerve pain and B12 injection
Nerve pain low ferritin and low b12 but no treatment 😪
