A lot of discussion was posted regarding symptom flares or worsening following B12 injections. Two different types of injections were noted. I would like to find out if any of the people in this discussion ever experienced symptom resolution, or did they just continue with problems from the injections? Please specify what happened if there was resolution or no resolution. Did you change the form of the vitamin? Did you ever experience any positives?
Did these misfiring or over firing neurons ever repair, or did the problem just continue?
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B12help
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This is for daughter. Mainly neurological, back, legs, arms, weakness in hands, tingling, blurred vision, now walking with cane age 36. Two very slightly bulging cervical disks, but docs say would not cause this.
The most important thing to remember is although we are all vitamin B12 deficient (or trying to get diagnosed) we all are different ages, sizes, genders, have difference medical histories, genetics, length and severity of deficiencies and causation. Some of us are functional B12 deficient, others have PA (with or without positive IF antibody blood results).
Some of us had low ferritin whilst others also had low folate. See how complex it has become already.
So, your daughter’s symptoms are specific to her and that’s why it’s important to track symptoms and look for progress.
Me, I was practically bed bound for 6 months, I had vertigo, trigeminal neuralgia (particular nerve on face), migraines, tinnitus, swollen tongue, difficulty swallowing, started to mispronounce or forget words, eye tremors (so seeing double) poor hand eye coordination, to sit up I had to hold on to something (I’d retch, vomit - sorry) on standing a very pronounced tremor like Parkinson’s, breathlessness, very high heart rate at rest, walking it’s called ataxia (trembling, wide base walk) and freezing mid stance, bladder incontinence. Numb from knees down, GP left me to it after 4 weeks of loading doses, saw a private GP admitted pretty promptly to a neuro ward. Other deficiencies found.
18 months on of EOD injections sometimes once a day I’m 70 % better. A month ago, I posted about finally being able to feel my feet. But I am a coeliac, no dairy and hypersensitivities who’s gut has not healed.
I worked with a private dietician, functional nutritionist and now studied in this area for my own health. Cold ie winter makes my symptoms worse, pain, fatigue, weakness. I know what herbal remedies work for me and my poor chiropractor gets asked a million questions. Why am I sensitive to vibrations, electric toothbrush brush use, hot baths etc etc.
An acquaintance is studying Physiotherapy as they had a traumatic brain injury and there’s research about radishes which are rich in Sulforaphanes aiding in repairing nerves. But some of us have low stomach acid or gut dysbiosis, so may need other vitamins, minerals, or probiotics/antibiotics due to h. Pylori or Small intestinal bacterial overgrowth. It’s a big jigsaw.
Yes, gut dysbiosis. Probably way more common than it ought to be. She is terribly frustrated, although her B12 apparently measured normal not too long ago.
Gut dysbiosis - oh dear. If you are in the U.K. I feel that it is poorly recognised. May I ask how it was found ? Whether antibiotics were given. It takes time and patience to get the gut back to health.
Pop onto gluten free guerrillas here, coeliac disease means you are more prone to SIBO/SIAO/SIFO - that Small intestinal Bacterial/Archaea/Fungal overgrowth.
I didn't feel any different after the B12 loading dose and then continued to deteriorate after the maintenance dose (1 every 3 months). GP got my MMA tested : it was raised. This MMA should have been linking up with the introduced B12 and clearing from the bloodstream. I was diagnosed with functional B12 deficiency which was confirmed by the testing laboratory.
My injection frequency was changed to 2 per week. This really did help - noticeable improvements, so treatment was continued. Three months after this started, I finally felt that I was being injected. Not that it hurt, just that I knew it had been done where before, I had felt nothing at all and always had to ask if we were finished.
Like Nackapan , not linear. When I did get worse again, after another three months, my injections were reduced to once a month and I was sent to consultants as my GP wasn't able to discover why. This new frequency had been expected - but I was not yet ready to manage on this. After a locum haematologist reported to my GP that I should certainly not be getting more than one every 2 months, I realised that I needed to self inject to keep improvements. I told my GP the day after I started- just in case she put doubts in my mind about what I was doing ! I continued to use the hydroxocobalamin, as I already had evidence that this worked for me. I started off with every other day injections, later reduced this to twice a week -the same frequency that my surgery administered previously. This generally seems to keep me on track. There are "blips" but they don't last long - still trying to work out cause/s.
MMA finally on 6th test was within range: it had taken about three years. My folate and ferritin, to stabilise at optimum levels, took about two years. My osteoporosis of the spine has now been reduced to osteopenia which took about four years - vitamin D3, medication and a lot of walking. Walking: something I was initially losing the ability to do.
Many symptoms gone, reduced or rare. Now focussing more on those symptoms that I barely noticed: burning tongue, angular cheilitis (cracks, soreness, bleeding at corners of mouth) and possible links with saliva duct strictures. Still optimistic about that -and still seeing Oral Medicine consultants. A work in progress.
This took a lot of time, but I hope will demonstrate that real improvement is possible even at a late stage, and can continue for years, if treatment and frequency appropriate to the individual. I really was glad to have had all the tests and consultants rule out anything else, as this lengthy recovery makes you doubt yourself at times, however determined you are.
A supportive GP who continues to push on your behalf and who will monitor changes is vital. I have been lucky there.
We are all different and at different stages. Previously very healthy, I first went to a GP in 2015 with fatigue etc. I'd never even heard of B12 then. I was 56.
Methylmalonic Acid test. This can be blood/urine. All six that I was given were blood tests, so perhaps more commonly the case in UK.I'm no scientist, but know that this test can be used if a clearer B12 deficiency indicator is needed. Not often, as not all labs carry out this test -not local general hospitals usually- and probably not cheap.
It cannot tell the difference between PA and B12 deficiency. But it should, by the time your loading dose is finished, be back within range. This is because it will build up, waiting for serum B12 to link up with, so the less b12 produced, the more MMA in your blood. My serum B12, because of the injections I was given, should have cleared away any extra MMA. But my MMA was raised, even though B12 had gone from under 200 ng/l to over 2,000 ng/L. My symptoms had worsened and increased.
This is what gave me the functional B12 deficiency diagnosis that my GP suspected. This was confirmed by the testing laboratory. It isn't always easy for a GP to get this test done, but she was successful on third attempt. The laboratory confirmed the diagnosis becase she had had the foresight to have renal blood tests done at the same time. Raised or high MMA can be found in bloods due to renal problems, B12 deficiency, or small intestine bacterial overgrowth (SIBO) - which can also be a cause of B12 deficiency as bacteria can rob host of this and other vitamins too. The test for this to be ruled in/out is a fasting breath test series which takes about 4 hours to administer, chart and interpret. This, no doubt, can also prove expensive. Mine was requested by haematologists to disount it as a cause for continued raised MMA, so done via NHS.
If you suspect that your daughter's problem may be malfunction at cell/tissue level, then the MMA test may be the answer.
One of the reasons I first went to the GP was that I was having to hold onto the bus-stop sign in order to get to work in the mornings -because of lower back pain, left hip/groin pain making me unable to stand up straight for any length of time.
Ultrasound, x-ray scans and MRIs did not find a cause. Physio treated it as if it was bursitis - which only helped temporarily. A Dexascan later found osteoporosis of the spine- but was told this was not the cause of the pain. Osteoporosis has reduced over years to osteopenia now. I didn't even know this was a possibility.
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