I had 9 loading injections over the summer which cleared up most of my neurological symptoms and allowed me to feel better than I have for years. Six weeks later and the symptoms started to come back -- difficulty speaking (almost as if I've had a stroke -- swollen tongue and developing a stammer), aching joints, memory loss, poor coordination... This has a serious effect on my job (I'm a self- employed piano teacher and become unable to play or read music at the level I need). Eight weeks after the loading injections I've had a single injection a week ago and it appears to have made no difference. My symptoms are getting worse -- and fast.
My GP didn't really accept that I had a problem with B12 as I had no antibodies and my level was 'normal' at 272. I feel like I need to go through the whole loading process again. I'm a single mum and I can't lose my livelihood.
Any advice please on getting what I need? Could this be something other than B12?
Thanks.
Written by
oozlumbird
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I presume you are getting hydroxo B12. I ended up getting my injection monthly.
To convince your Dr for more frequent injections, start a timed logbook of your food, drinks and medications. Log your symptoms and try to assess a severity score. Look back 12 to 24 hours to see if any food or drink has caused the symptom. This delay occurs because the gut is involved.
You also need to supplement with a daily multi-vitamin, B6 and folic acid to get the most out of B12 and repair the nerve damage. However, the repair is very slow and the log book helps with both the short term memory loss and the long term progress.
IF you suspect a food allergy, remove it completely from your diet for 2 weeks in order to completely detoxify. Then reintroduce and monitor for 48 hours to see how you react to it.
You will also see some symptoms reappear within 24 hours after getting the jab. Once you know what these are, you can anticipate them and stop worrying about them. I get a bout of diarrhea if I've been low on B12 before the jab.
Worry causes stress which consumes vast amounts of B12. The log book helps sort the causes of your symptoms and gives you come control back. This will reduce the worry and stress and help the B12 last longer.
Next time you visit your Dr, write up all your symptoms on a piece of paper that you can give to your Dr. Discuss your "management plan" with your Dr. Take control of your treatment and keep him/her involved in your progress and decisions. You still need your Dr to write the prescriptions.
I sustained lots of damage when I "crashed" again. I now self inject daily and take sublingual B12 plus supporting supplements. I am able to work again and am still noticing improvements in my mental function.
As well as the brilliant people on here and the PAS website there is lots of help and information on the Facebook group.
Hi, I dont think I ever got over my neuro symptoms, but I did feel a lot better and they did improve. It was very low 20 and my haemaglobin was 8. I had angina symptoms and enlarged red cells, I do need the shot every thre months nd I take the spray boost when I feel very tired. I have also started taking seaweed crackers. It is an acquired taste but full of things we need. I think this does help. I hope you feel better soon. I also found dairy milk helped me . Good luck x
Is that dairy milk as in the white liquid stuff that has a bad effect on my stomach, or the yummy stuff from Cadbury's that has a bad effect on the size of my stomach?
Hi Deniseinmilden. may i ask what form of b12 u take & how much? do u know what's going on with your body that you have to take it daily as opposed monthly or bi-monthly?
My daily jabs, which are essential to me, are hydroxo and the sublingual tablets and spray I use to keep me going are methyl. I have recently tried a fast disolving cyano sublingual tablet which tasted great and was easy on my tongue but I don't think it gave me such good results - I felt a bit weird and wobbly until I used my sublingual methyl spray.
Sorry - forgot to reply to all parts of your question!
The jabs are 1mg in 1 ml / day.
The tablets are all 5000 mcg (5 mg) & I take loads of those according to what I'm doing/need. I don't know how many but it's about 10/day.
The spray is 1200 mcg and I add in a number of squirts / day. I most easily absorb this and it is my best way of getting my levels up - I can even get to the being spotty stage I experienced when I had my first loading doses - but I get a sore throat if I use that a lot.
I haven't tried nasal sprays.
Goodness only knows why I need so much! I didn't need so much until I crashed when I didn't get jabs often enough twice.
I've had B12d for over 20 years and have lots of damage which I'm trying to repair and I work very hard when I'm awake.
I think my body was very frugal with the tiny amounts it was absorbing and as soon as it had plenty it got "lazy".
I expect I have a functional B12d, like Gambit.
To be honest it is hard enough getting my treatment and being able to work that I don't have any reserves left to fight the system for an investigation. And I'm afraid of them causing problems for me if they look into it!
While what I am doing is working and I'm slowly improving, I don't want to change anything!
I take Boots A-Z multi vitamin & minerals plus 1600 mcg extra folic acid - my blood levels are good but any less that that and I don't feel the full effects of the B12 !
Then I have to have lots of potassium which I get from food and drinks, including coconut water to stop me getting cramps & my vision going weird.
My magnesium levels seem to be coping...
No your symptoms only too well, but when I'm just in Normal my doctors don't do the injections. I find if I buy pigs liver (best for b12), n have a good helping of liver in onion gravy with mash n veg (are you vegetarian whoops) it helps. Need liver once a week at least, liver stroganoff good to. I make my own pate and freeze small batches defrosts well. B12 All the best.
Hi everyone. Thank you so much for your help. I've actually just taken a double dose of methyl folate and feel a bit more on top of things. Is that possible or is it wishful thinking?!
I was receiving 1 jab a month from my GP, but like you, I crashed about 3 months ago. I couldn't convince my GP that I was B12 deficient, so about a month ago I started self-injecting with hydroxocobalamin. It wasn't until started jabbing myself every second day and sometimes every day that I started improving. I also take sublingual methylcobalamin and a transdermal oil that I massage into my arms every day. Like you, I seem to need an enormous amount of supplementation now, but perhaps this will reduce as I improve. The weakness in my legs and arms has disappeared as has the sore mouth and palpitations, but my tongue is still swollen and sometimes tingles again. Perhaps I will never get rid of those last symptoms, I don't know, but if you can't get any joy out of your doctor, you can always go the self-injecting way. Best of luck! You will get there in the end.
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