I don't have a diagnosis of PA or even deficiency because I have been supplementing B12 for years, one way or another.
I have hypothyroidism too and Atrial Fibrillation all the time.
I have horrible peripheral neuropathy in my feet and it's spreading up my legs. My legs are restless and painful. Walking is hard. My legs just won't "go" and my feet hurt so much.
This weekend will be the end of the 5th week of SI every other day.
At first I thought my hissing ears were going, but they are back. My feet, if anything, feel worse. Same with my legs.
Should I be feeling some sort of relief by now if my issues were B12 deficiency related? Or do I have to give it a lot longer? I have heard of people feeling worse before better. I can't remember the term for it.
I can barely function really. It's such a waste of a life.
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FancyPants54
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Although you have previously been supplementing with B12 tablets , if you have PA , they have not been helping you , You need injections for PA. .
Do keep injecting EOD . Ive been reading posts on this forum for 9 years , and i read that very often when treating PA. things get worse before they get better . So don’t give up. if you have been deficient for a long time ,your recovery will not be swift . Do supplement as well with a modest folic acid tablet —400 mcg (That’s Vitamin b9.) It works together with B12 . Eat a good balanced diet . Fermented food is also a good option Real yohurt kefir . sauerkraut .etc — Or if not , a probiotic tablet / capsule .This helped me when I first started treating P.A . as I had awful” gut “ problems with it .
I’m sure you will get better responses than mine . But I wanted to get in touch , because I know how desperate you must feel . The medical profession has such poor understanding of PA / vitaminB deficiency. It’s very difficult to get a diagnosis , especially now with the NHS in a bad way .
It’s great to know that you cannot overdose on B12 . Best wishes . And keep in touch .
PS — Your hypothyroidism might be Hashimoto’s , which is an autoimmune condition , as is Pernicious Anaemia. These two autoimmune conditions are the most common combination
. It is well known that Autoimmune conditions seldom come alone . I have 3 -Rheumatoid Arthritis, P.A and vitiligo .
It can take many months to get symptom resolution with B12 injections. I was advised by my neurologist that this may never happen, but this summer (after injecting somewhere between EOD and every 2 weeks for perhaps 9 months) I realised I no longer had any tingling!With the support of my haematologist, I've been gradually reducing down the frequency. I got to 4 weekly injections, and after 2 of those, the tingling, fatigue, and mental slowing is back.
In summary, it can take a long time, yes, my symptoms got worse first. But, if things really aren't improving, you may need to consider whether the diagnosis is correct. When I was found to be B12 deficient and did not respond to the initial loading of injections (or more correctly, they didn't last), I insisted on being referred to a haematologist. My haematologist (Dr Clare Lodwick) is fantastic and very supportive.
If you have ongoing symptoms, I would push for a referral.
I don't have a diagnosis of this. I'm self-medicating based on the fact that my B12 was always under 500 before I started supplements a number of years ago. The supplements, as I have now discovered, don't help me much so I'm trying the injections. Mostly my suspicion of B12 deficiency is based on the horrible, increasing peripheral neuropathy and my Strange feeling gait. There are a few other possible symptoms, but they could be from the hypothyroidism so I can't for sure blame them on B12. But the symmetrical neuropathy is a big problem and a big clue.
Did your tingling/numbness get worse at the start?
It's a long time ago now (and my memory is not great) but, yes, I seem to remember worrying that I was overdosing on B12 because everything was getting worse. Then I looked into it more and found that others felt the same (and that you can't get toxicity from too much B12, you just wee it out).I also remember a massive energy boost after my first injection (that stopped after a while).
At the time of diagnosis, I'd had peripheral neuropathy symptoms for several months (which I'd incorrectly attributed to topiramate), so it was probably 6 months down the line before I started injections. I had the 6 injections over 2 weeks, felt a bit better for a couple of weeks, then nose dived again. My husband checked my reflexes (they were very abnormal) and I went back on the injections again ASAP (at that point I started self injecting). I nose dived again a few weeks later and started to improve with some folate supplements.
Then, I had the usual ongoing battle to continue the injections and insisted on referral. I've been on regular injections for over a year.
I'm a bit disappointed that I won't be able to reduce the frequency of injections very much. I'm just waiting to speak to my haematologist again before I increase the frequency back to alternate days because I don't think the GPs will be happy to let me have more without her say so.
You may find it hard to get a diagnosis without a low B12 level (just the reality of the situation). Although, my husband is now looking into it in more detail and discovering that you can have a normal serum B12 level but be functionally deficient. Intrinsic factor antibodies are only present in a third to a half of pernicious anaemia cases (I've been diagnosed with antibody negative pernicious anaemia - which confused my neurologist because I've never been anaemic...). The neurologist has been useful in getting access to nerve conduction studies though, which were reassuring because they showed there was no permanent damage. But she did tell me to stop crossing my legs and make sure I didn't have any pressure on the backs of my legs when sitting and that I don't lean on the desk when working! It was quite sobering, and I can tell very quickly when I've crossed my legs because the tingling rapidly returns.
I know about functional deficiency and if I have any deficiency it's likely that because I have been able to wind my blood levels right to the top of the range and never felt any different at all.
I'm buying my own B12 and equipment so I'm not at the beck and call of a doctor. I had said I would give it at least 3 months, now I'm refining that to at least 6 months, perhaps a year.
Thank you for your helpful and reassuring replies. I needed to know I was not alone.
Thank you wedgewood . I must dig up some resources of patience. I seem to have run dry. I don't know how to cope with such painful feet and such stiff and ungainly painful legs. I'm just feeling really down I suppose. I needed a little sign that I was on the right track.
I will keep going. I do take a folate supplement. Have done for a little while as my folate was too low in the earlier summer. I love fermented foods. We make a lot of them, although I haven't eaten much since I started the injections. I should remedy that.
I have recently read that hissing in the ears can be a symptom of hypothyroidism. I now have hissing and have sent for a private thyroid test to see what my thyroid is up to. And, of course, one auto-immune illness often comes with a companion or two. Hey ho😱
I am hypo, and yes the hissing could be from that. I can't get optimally medicated no matter how hard I try. Like everything else, I'm on my own with that condition too because the GP declared me "fine" years ago once my bloods came into the range. I haven't ever been "fine" or even close to it since diagnosis and commencement of treatment. I'm currently trialing natural desiccated thyroid, Armour brand. Nearly a year now and still not optimally medicated. This is all so slow. I've lost 8-9 years of active life.
I think Wedgwood said it perfectly. It takes time for your damaged nerves to heal. One must remember that it is NOT B12 deficiency that "directly" causes nerve damage. Rather B12 deficiency causes damage to the myelin sheath, the protective covering over your nerves. It takes time for your body to repair this sheath after proper B12 levels are reached. Only then does repair of sheath start and I have read it takes 3 months for the repair of myelin after a traumatic nerve injury. Although these reports are not B12 related I think we can assume a similar timeframe or longer for your nerves. Additionally, as you've started treating with B12 and during the lengthy time that your myelin sheath is being repaired it would make sense that until that sheath repair is completed, that additional nerve damage will occur. You might liken it to having a leaky roof. It rains, you notice it leaks and is damaging the inside of your house. You decide to have your roof repaired and as the roofing contractors are repairing the roof it rains some more and more interior damage occurs. Much like the roof, the myelin sheath repair has to be completed before the nerve damage stops.
My own personal experience is that the process of nerve repair was very painful. This seems to me to be the nerves "waking up" I presume. For me it was at times like having a thousand minions stabbing, especially my right foot and leg, with ice picks!
Just stick with it and if you've not had an official diagnosis of PA/AMAG I suggest pressing to get that.
You describe all that very well. And yes, my sensations do seem to be getting worse, especially at night and first thing in the morning. Getting to put my feet down out of bed is horrible. All I can comfortably wear is Crocs flip flops! They are wide and give me a wider base to balance on and they are not confining my feet. Even my slippers are horrible now. Shoes and boots are crippling me. So if you see a woman out in bright pink flip flops in the snow this winter, come and say "hi"!
There can be other causes of peripheral neuropathy. My mom had Guillaume Barre syndrome and that moved up her legs. It would be worthwhile to get checked out for an alternate cause. The injections won't cause any harm so you could continue those in case it is B12.
I've just looked that up. I don't think it can be that because the first symptoms of this, a feeling like my socks had slipped down and under my toes in a bunch, started in November 2019 when my dad was in hospital in the slow and distressing act of dying. It's just slowly gotten worse and worse since. That's a period of years. The NHS symptoms for GB show it developing in a few days or weeks and starting to clear up in a few weeks or perhaps months. This has just gone on and on, getting worse and worse and now it's definitely worse since the start of injections. I can cope in the day, but it's very hard to cope with in bed. The sensation is astonishing really. Now I have to put boots and shoes on, which constrict my feet more than flip flops, I can hardly bear to walk in them.
I put that off as long as I can. I really don't like going. I have been left to it with a couple of big issues. I just think I can handle everything because I've had too. But sometimes I can't. It's probably getting close to going about it. I've just been thinking about it.
I have had a lot of problems with a doctor who discounted my symptoms and would not do any tests to find out what was wrong. That is why I suffered from pernicious anemia for several years (and other things). Eventually I found a much better doctor. He listens and is willing to do any tests I suggest. He ends our visits by asking if there is anything else he can do for me. Your symptoms sound really bad. If you wait too long, it may be harder to fix things. It's nice to just have a normal life instead of having to "handle everything". Very best wishes.
I've viewed videos from this channel before and I am quite distrustful of it because it seems to offer what may be false hope to patients who have suffered from neurological damage for decades. I would take them with a major pinch of salt. To my knowledge, although some neurological repair is possible, there are certain types of severe neurological damage which, if they progress far enough, do not seem to be reversible. We all want to be positive about the chance of improvement of symptoms but I think it is cruel to assure patients with decades of neuropathy that its absolutely possible to heal. They don't know that to be true and nobody knows that. We can just do what we can and hope as much damage as possible is reversible without needing to believe in miracles which could result in crushing disappointment.
The science of nerve repair is advancing all the time and at least that's something that can be looked on with hope for the future.
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