Hello all! When I last posted 2 months ago, I had questions regarding the possibility that my daily 1,000 mcg sublingual might no longer be adequate to address PA, even though all of my test results were adequate (MMA, Homocysteine, MCV). Since then, however, I've developed left ankle numbness/pain. I've had left side pain (ribs down to hips and back) and left calf cramping pain for past 7 months. Have had a slew of tests, most recently MRIs of back, followed by EMG by Neurologist. Dx is "left L5 radiculoparhy as well as axonal neuropathy, perineal and tibial nerve distribution"Rx is for Physical Therapy. Should I begin a lead-in protocol of B12 injections even with adequate numbers, or chalk this up to the spine issues of a 66 yr old (but an athletic, avid distance walker one)?
Thanks in advance!
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1000mcg is not enough. Sublingual B12 doesn't work the way it's supposed to. Apparently to pass across a biological membrane unassisted a molecule needs to be relatively small and lipophilic. The B12 molecule is both large and hydrophilic. It can't get into your blood stream. You are swallowing the sublingual and it is being absorbed in your gut via passive absorption. This method is very inefficent. I have to take at least 15,000 mcg daily.
IIRC it was not clear that you had a B12 deficiency or PA from the previous message. But a trial of B12 injections is unlikely to cause any harm, and if it does affect symptoms then it will be worth it. I would continue to investigate as there are many possible causes of neuropathy. The 1000mcg dosage would be perfectly adequate in normal circumstances for somone of your age but may not be effective in the case of PA or a severe absorption problem.
I have had both slightly elevated IF results (last result was 1.2 with normal range between 0 and 1.0) and negative IF results over the past 5 years. I loaded with shots 5 years ago and began the 1000mcg sublinguals soon after and ever since. I am concerned that my well has run dry and now my body is reacting. On the other hand, my spine issues have been developing over time. Not sure if it's a case of chicken or egg.
That's positive regardless of the actual level and the other negative tests - it is diagnostic for PA, which requires lifelong injections.
Tablets work only for some, or they work for a while but eventually injections are needed.
If I were you i would ask to be treated according to guidelines - every other day injections until neurological symptoms resolve or 'stop improving'. Failing action from doctors, self injection is always possible.
For Technoid: Thanks for your response, but can you please clarify "a trial of B12 injections is unlikely to cause any harm," as the word 'unlikely ' is standing out for me. I most certainly do not want to cause myself any harm.Thanks.
Okay. I try to be cautious in my language, maybe over-cautious, but in rare cases, a B12 injection can result in an extreme allergic reaction known as anaphylaxis. This is why it's commonly recommended to have your first B12 injection under medical supervision. It is an outside chance, and extremely rare as far as I know, but since it has happened it is worth mentioning at least in an abundance of caution.
My iron and ferritin are within range, although both dipped on last blood test. Ferritin is 46 ng (30-400 range) and iron is 94 ug (38-169), iron saturation is 24 % (15-55). All levels were a bit higher in previous bloods 3 months earlier (61,129, and 34% respectively). Folate is 13.6 ng and Vit d is 44.5 mg (30-100). MMA is 107 nmol (0-378) and homocysteine is 10.5 umol (0.0-17.2).
I hope you get the treatment and support you need.
In the UK, guidance for doctors suggests that if a patient is symptomatic for B12 deficiency, they should be treated even if their serum b12 is within normal range.
MMA and homocysteine tests would usually pick up cases of functional B12 deficiency ... where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.
I have read of cases where a person has developed damage to the spinal cord from B12 deficiency with normal range serum B12 results.
PAS (Pernicious Anaemia Society) article about SACD, sub acute combined degeneration of the spinal cord
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Sally Pacholok is a US campaigner on B12 deficiency issues.
She has written several online articles about B12 deficiency and has videos on Youtube. I also came across a slide show online about B12 deficiency that she gave to a conference about ageing.
2) Club B12 is a group of researchers, doctors and other interested people across the world who are looking into B12. They have regular zoom meetings and are hosting a conference later this year in Cambridge, UK.
I’m sorry you are having this problem but I think it would be unlikely that the cause is b12 deficiency/PA. The nerve damage caused by this deficiency usually affects both sides of the body although one side of the body could be affected more than the other.
I have no medical training, only my own experience and the experiences of others I’ve read about.
Thanks for your reply. That's the first time I've heard about both sides of the body usually being affected. My PT believes my ankle and leg pain are 95% back related. My question is what's causing my back issues in the first place. As the book asks, "Could it be B12"?
Yes! I have SACD and both sides affected. I'm sorry to hear what you have been going through. I thought it could be either but sometimes having one side may lean towards a particular problem. I don't believe this determines whether you have PA or not though. I have been having pain in my ankles and up to my knees when walking which is when I really feel the pain from it. My ankles feel stiff. This is just one of my symptoms. I can tell you that SI everyday along with 5 mg of folic acid and multi b with low or no b6. And I eat bananas and other foods with potasium everyday. All of these together are helping me to fix symptoms one by one. I am following the protocol of the PA and b12 def support group I am also with and it is working for me personally. I had the same IF result as you and b12 was just into borderline an yet I have extensive nerve damage from obviously long term undiagnosed b12 def . Good luck with your journey!
In 2012 I suddenly lost use of my left calf, which meant I was no longer able to get into the ball of my foot, which meant I could not re, or walk properly. Prior to that I had been scuffing the toe of my left foot while walking, and stumbling a bit sometimes. I also had been losing sensation in both feet. My problem was diagnosed as delayed effects of a ruptured disk at L5-S1, with damage to impinged nerve on the left side. Before surgery, I asked the surgeon why, if nerve damage was to nerve on left side, I was also losing sensation in my right foot, and he was puzzled by that. After surgery there was a small amount of immediate improvement in my ability to walk, but there was no further improvement. In 2021 I was diagnosed with B12 deficiency and put on the wrong treatment, for blood symptoms rather than for nerve symptoms. After a couple months I had done enough reading (particular "The Many Faces of Cobalamin (Vitamin B12) Deficiency") and had joined this forum, and knew enough to insist on daily injections, which the doctor agreed to. Since then, very slowly, I have had some function restored in the left calf, and I am cautiously optimistic that improvement will continue. My hypothesis is that the compromised nerve at L5-S1 was among the first nerves to show deleterious effect of B12 deficiency.
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