B12 and rapid feeling better, and then not....

[Lorilee60]

Sorry - asking more questions and a discovery. I am getting B12 injections weekly (from 2x a week) and I feel much better for a day or so, and then symptoms start creeping their way back. I am not ever symptom free - as I know this takes time. I started adding in b12 sublingual twice a day (1000 mcg) and a multivitamin (bariatric advantage - so quite good quantity of b12 there as well). I can tell when I take the sublingual within a short time frame some symptoms getting better. Is this normal? Does this mean my body doesn't know how to use the b12 injection? I have been on injections since early May, though the first 3 weeks was only 1 injection.

I apologize for asking so many questions - I just know where to turn. Thank You.

[Grannyweatherwax]

You may need to go back to the 2 x weekly if you need extra dosing to feel ok? I don't know it's a possibility they took you off the 2 weekly too soon.

How long have you been symptomatic prior to your diagnosis? I mean, how long have you been poorly?

It also takes time to build up a good supply in the blood.

How is your folate level? (folic acid) (need folate to process the B12 adequately)

[kimm5201]

Check your Folate. I take Bariatric vitamins also, and there is not much Folate in them. I supplement with extra Folate (Methylfolate 400mcg) daily.

[Lorilee60 in reply to kimm5201]

I was taking folic acid - is that different than folate?

[Grannyweatherwax in reply to Lorilee60]

folic acid is the medication/name of the vitamin/mineral, folate is the level in your blood, you use folic acid to increase your folate

[Sleepybunny]

Hi,

Have you read the book "Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart. The authors are from USA and it may have some helpful information.

[Lorilee60 in reply to Sleepybunny]

I have...even brought it with to a dr appointment as I feel I am the one guiding my recovery.

[potter5]

Hi Lorilee60, not sure what is normal improvement. with b12 neurological symptoms as everyone is different but from my own experience, I have been having 2 or 3 injections weekly and sometimes sublingual as well since last September, diagnosed June last year and had loading doses then. Some of my symptoms, palpitations, vertigo brain fog etc have improved. Other symptoms pins and needles, burning then ice cold feet and toes, banding, cotton wool feeling, cramps, spasms only feel a little better after injection and within a couple they are starting to get worse again and I know I need an injection. According to the neurologist I saw last september, he said the nerves take a couple of years to heal. I suppose it all depends how long the nerves have been damaged and left untreated. What else can we do but listen to our body. Sometimes symptoms like electric shock and tingling will start up again in my hands and it is natural to worry, I also take a good multi vitamin twice weekly. I think everything counts, plenty of leafy green vegetables and fruit, bananas, kiwi avocado and mango for potassium may help. I think also when you get tired the nerves react, I am always worse at night. Try not to worry too much it is early days. I hope you feel improvement soon. Best wishes.

[Lorilee60 in reply to potter5]

Thank you! I just want it all fixed now and I know how unrealistic that is. Today was not a good day and it tough on me when I have a good day or two thinking I have turned the corner. Do you self inject?

[potter5 in reply to Lorilee60]

Hi Lorilee60, I get one injection each week from GP surgery and my partner injects me the other 1 or 2 each week. So since last september it was 3 a week and over the last few months I was trying twice a week as I have thin arms and was worried injections every other day was too much for me. But if I feel the symptoms flaring up i just get an injection Never more than 3 a week total. Like you, my symptoms have never gone even for a day. Sometimes after an injection I would have normal feeling maybe in one toe but only lasts for minutes. At the moment I am going through a bad spell and am experiencing constant pins and needles in hands which is new symptom, and my feet which are never free from cotton wool and banding sensations feel worse. But I know there is nothing else I can do but but inject, try to rest, eat well and hope that time will make a difference. Try not to worry as you have only been having injections since May and nerves don't heal that quickly, it will take time, . Just keep having the injections and vitamins I know stress and tiredness makes things feel worse so take a day at a time. Kind regards Potter 5