When my mother was diagnosed with Vit B12 deficiency two or three years ago her level was 140 pmol/L which is approx 189 pg/ml. She was started on Neocytamin B12 injections three monthly right away and it fixed her immediately.......even though she had had symptoms for several months before the diagnosis.

So what I can't quite understand are the discussions which talk about PN getting worse before it gets better once Vit B12 treatment has commenced! Can someone tease that out a bit more for me please?

Also if the PN persists (in cases of PN of unknown cause) despite Vit B12 supplementation then what's the scientific basis to continue it -assuming levels are at a reasonable level?

I'm sure Rose or Mrs D will come by but did you also look on the vitamin section because there is so much on B. I thought for some during repair it can feel worse. I think Jarret had a post here that was talking about how she felt it was making her feel worse but then found it helpful and that post was on here maybe a page back. Hopefully the others will come by but that may get you started. I know very little on this

I'm not sure it was the B-12 by itself that was causing the pain increase. It may have been the form of B-12 I was using at that time or one of the other supplements I was taking. I'm now using the methylcoablamin form and it's working wonderfully well so far. At the time I experienced a severe increase in pain level it was constant and lasted for what seemed like a long time. I visited one of my daughters for a long weekend and wasn't taking my vitamins as I had been at home. It was a *lot* of different pills all at different times. I experienced a very noticeable drop in pain after that weekend. So I stopped taking everything since I couldn't seem to pinpoint exactly what was causing the issues.

Overall, the B-12 has decreased my symptoms 90 - 95% of what they were before starting the B-12.

many people here are better informed than i am. What i can tell you is that not all people heal in the same way: The fact that your mom healde immediatly after the b12 injections doesn't mean that all people will go through the same process. There are reliable sources that state that healing many time looks like damaging. Stick to the idea healing is the cause of what you experience and do everything you can to help your body heal. Gooo luck!

my foot neuropathy from being hypothyroid, I was astounded how my feet
changed as the hormone took effect finally.

I was young then--almost 30 yrs ago -- when it started. I had severe pain first, like walking on glass shards. Then I guess my feet went mostly numb and I learned to ignore it. At the time I did not know it was connected to the
hypothyroid thing.

Once I started on hormone however, my feet started waking up. Tingling, burning etc. It took months for that to go away. I was ultimately left with some numbness on the tips of two toes on each foot. Which now, comes and goes.

So I do think that nerves send pain signals while going bad, and then when getting better, if you are coming up from numbness. The MP pain in my thigh is like that... if I over do or expose it to alot of heat...it shoots like the dickens.
If I am careful, it is only a little numb there. I have been very lucky with the MP pain... the Lidoderms really helped with that.

I often wonder if nerves just go bonkers and can't shut off. Like a broken faucet. When I numbed that MP nerve...for 2 weeks, it died down tremendously.

I don't think there is a solid answer for everyone. Movement, basic health, and other personal factors may make things different for everyone.

I think the point is that it CAN happen, not that it always will. I think it probably depends on the severity and duration of the damage already done when a B12 deficiency is diagnosed.

I had sporadic symptoms for a period 5 years prior to being diagnosed, but what I call the onslaught of symptoms was during the last six months...when things were turning from occasional nuisance type things, to really scary things. In any case, I mostly just got better... except for a heavy fatigue that hit. The majority of my serious symptoms resolved over 3-6 months, but I continued to see improvements into the second and subsequent years. I like to think my cognitive problems are still improving (memory, attention, concentration).

Some people can actually experience worsening of symptoms, initially. I think the caution is given, so that people aren't discouraged and decide that the B12 isn't helping.

Here is an excerpt, highlighting that the response can be individual, and it may include an intitial worsening, with improvements sometimes continuing well into subsequent years. It is an excerpt from the section on B12 deficiency..

Hi Megan, i think its been explained perfectly so i just wanted to add that sometimes increase in symptoms also can be the person becoming tolerant to the whatever drugs, this happened to me, so i backed off the drug for about a week then went back up to initial dose, then it worked again properly, so just to confuse us more it can be a fine line in trying to distinquish between repairing & drug tolerance.

Just curious about your mum's ordeal with low B12, did she have nerve damage ?
or showing other symptoms, i am glad the Hydroxocobalamin shots worked for her anyway

Brian

Thanks everyone YOU ARE ALL LEGENDS!!

According to the medical criteria for B12 deficiency I did not have a diagnosed deficiency at 267 pmol/L (which is approx 361 pg/ml). However I do now agree - having read many articles, that supplementation at this level is warranted.

Brian - my mum had localised pain in two places before her diagnosis of B12 deficiency. One was a single toe which became troublesome as soon as she went to bed. She describes it: "like it was on fire with a thousand needles attacking it". It kept her awake and was quite distressing for her. The other place was one side of her head she had a patch of constant prickly, itchy, annoying sensations which were a problem during the day.

The funny thing though was her regular GP was away the one time she wanted to raise this problem, so she saw another GP who sent her off to a vascular surgeon to look at "this toe". The vascular surgeon said it would get worse in winter when it was cold because of the blood circulation being more sluggish in the cold months etc etc. Yet this was summertime and she was being driven mad with it. When her GP came back a few weeks later she mentioned to him that she had been seen by the vascular surgeon for the toe and her GP asked her to describe her symptoms. He straight away said that isn't a circulation problem that is Vit B12 deficiency and he did the test pronto!

It just goes to show how important that first doctor you see is, such as a GP. If they stuff up then a problem can become very protracted.

She has put this particular GP up on a pedestal ever since and continues to be most unimpressed with the other GP and the vascular surgeon.

Last week mum was at the doctors again for her B12 shot and she asked the doctor what her latest level was and he said it was 1,400 pmol/L (1,897 ng/ml). So is that the kind of level to aim for or is that too high!

Megan, that's one good GP your mum has, wish there were more around like him.

Brian

Wish I had her doctor. He sounds wonderful and I hope the supplementation helps her. Hugs to you and her!

Billye