I’m new and want to see if people who had this for years and developed severe symptoms can explain their experience. Specifically people who have issues with legs. Thanks.
I’m new and want to hear from people ... - Pernicious Anaemi...
I’m new and want to hear from people who had this long term and had neuropathy in arms and legs and/or lost ability to walk.
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Meblue
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Hi!
In what way? What do you want to know?
Basically gradual onset of various paraesthesia and ataxia to the point where pretty much all the normal sensations in my legs were replaced with wierd ones at best and I had minimal control over them. Complicated by balance issues and a lack of cognitive skills, I could barely walk (or talk, with virtually no memory).
With daily injections and supporting supplements over the last four years I have regained almost total use and sensation.
Odd upsets can cause a reoccurrence of symptoms and I'm currently trying to free my toes of neuropathy but generally I'm OK now.
That’s exactly what I am experiencing. My legs feel so weird like they aren’t normal at all. Over what period of time did this occur for you? How low were your levels?
It took 20 to 30 years with varying degrees of undiagnosed symptoms to get that bad with an increase towards the end. I was only at my worst for a few weeks - I think: I'm not really sure because I lost my memory.
While most of the worst problems went off in a few weeks/months, I'm still improving after four years of daily SI but please remember everyone is different.
Above all get the level of treatment you need and don't give up hope!
I can't exactly remember my levels but I think they were in the 150 - 170 range with limits of 201- 900 so I wasn't considered bad by the Drs, despite the state I was in. Eventually I got loading doses and was great for 5 weeks and then crashed again.
In the end I went to my surgery and just stayed there until they either put me in hospital or found a care package for me or gave me more jabs. When they wanted to lock up and go home they gave in and agreed to give me more jabs!
Once I was well enough to buy my own ampoules (4 months later) I did and have improved since.
Wow, that is a long time. Were your levels that low the whole time, or do you know what they were? So your legs were kind of a gradual progression? Did you have fascillations and burning, etc? I appreciate all your information.
I had no idea what my levels were, I just know that I had obvious symptoms that were worse sometimes than others for that long. I was written off with CFS/ME and the Drs then stopped looking for a reason. In the end it took a dentist's referral to hospital and a chance locum pharmacist's suggestion of being tested for B12 to finally get a diagnosis.
Yes, all sorts of things - I guess "you name it..." - including formication - a sense of beetles crawling under my skin and a buzzing sensation on my thighs as if my phone is vibrating in my pocket (I can't remember the name of that one).
My legs were/are affected as part of my whole and I still get a "stinging nettle" sensation across my left shoulder. It often feels like I have a hair on my forehead when really I don't and lots of other nerve problems if my levels of vitamins and minerals get out of balance.
Hi there. I sent you a message the other day and wondered if you could answer a few more questions for me. Thanks.
I did see it - just haven't had a chance to reply, sorry. Life manic and my cows have now started calving too - 3 new ones today!
These messages are generally better than private ones as everyone can benefit from the information.
Later.... 🙂
Hiya!
Sorry for the delay - I had to cover for someone yesterday and then was involved with calving all morning today before I could get on with my work for yesterday! Thank goodness I'm having a better spell at the moment!!
You said you had a few more questions about my situation: "You said this was over a 20 year period. How long were your legs affected? Did they just start getting bad toward the end, or were they gradually getting more painful and weak. Did you completely lose the ability to walk? Were the muscles in your legs damaged and weakened? Did you have subacute degeneration of the spinal cord? Did it affect all your other muscles in your body (back, arms?). Also, did your legs ever get numb at times when you sat down?"
I'm afraid my memory still isn't great and I lost almost all recollection of everything when I was at my worst. I'm also not quite sure what symptoms in my legs were attributable purely to the B12d and what to the arthritis that I have also got - or if I wouldn't have the arthritis (or less so) if I didn't have the B12d.
I've had some problems with my legs, along with the rest of me, for all the 20+ years I've had B12d symptoms. I remember my other symptoms getting worse more than my legs before my diagnosis... but this may be because I had lost most of feeling in my legs towards the end and I didn't really realise until I had some jabs and the feeling started to come back. I do remember waking up one morning after having a series of jabs and feeling frightened because I could feel something warm and alive in my bed - and it turned out to be my feet that I hadn't been able to feel for as long as I could remember - at least 3 years at that point.
My cognitive function and everything else was too bad to really notice or remember much, I'm afraid.
I know I really struggled to walk as I couldn't feel my feet, my balance was terrible and I had ataxia - even if I was looking where I was trying to put my feet I couldn't really control where they were going.
I train cattle for showing as part of my job and I know that there were several weeks when I couldn't do it because I couldn't hardly walk myself. When I did start to walk them again I made them go very slowly so I could use them to balance me - bless them: they were good souls.
Other than that, despite my animals being one of the most important things to me and knowing that I must have trained "Primrose" that year and having photos of me with her, I have absolutely no memory of showing her!
I can remember my husband (who lives separately from me) getting my jabs for me from the chemist because I couldn't get about and me having to send him texts because I couldn't talk enough to speak to him on the phone but other than that I don't remember. I was only that bad for a few weeks because I started to improve as soon as I started doing daily jabs.
I guess my leg muscles did get weak but whether that was just because I used them less because of the ataxia and poor balance or specifically because of nerve damage within the muscles themselves I don't know. To be honest, that was the least of my worries at the time.
I've no idea if I had subacute degeneration of the spinal cord - I was too ill to be bothered to get any other diagnoses and, being self-employed, I couldn't afford to waste time/energy going to the Dr's - if I could do anything I had to work.
Yes, every bit of me from my eyelids to my toes and hair and skin, and brain, and, and, and, was affected!
Yes, my legs, including my bum, (and arms, etc) had always gone numb if I put any constant pressure on them. I bought a waterbed about 14 years ago to help ease the pressure on my body when I slept because I used to wake up unable to move because most of my body, especially my arms and legs, had gone numb and wouldn't work if I slept on any conventional surface. I still have to be careful not to cross my legs in my sleep or lay on my arms.
If I just sat down I would go numb from the waist down and always got pins and needles when I stood up again. This must have been the case for a lot of years because I thought this was normal until I'd done several months of jabs and it stopped happening: then it felt so weird to be able to feel what I was sat on. I almost never get pins and needles now.
Until I was so bad I lost my ability to balance I was OK riding horses and bikes and I guess this was because my legs were always moving and therefore keeping my circulation going.
Before your legs and arms got numb, were they burning and painful for a long time? Pins and needles for awhile?
Um... I don't think so.
More recently I have had neuropathy in my toes and that's definitely the case with them.
It did it in my fingers in the past - and hideous itching too.
So do you have pernicious anemia or just b12 deficiency? I guess I’m still not clear on the difference. Can you have a b12 deficiency with neuro symptoms and not develop pernicious anemia?
I only have a diagnosis of B12 deficiency because I was not specifically tested for PA - I think that's a test for intrinsic factor antibodies but even if you are tested negative, it doesn't mean that you don't have it because the test is very unreliable.
You ought to look that up in someone else's replies or ask in another post for clarification as I'm not convinced my memory of it is accurate, sorry!
My Dr said I couldn't have PA because I wasn't anaemic - which I knew wasn't how it is diagnosed - and at that point I was more concerned with staying alive than fighting an ignorant system so I didn't bother to argue with him or push for further testing: I knew I needed lots of B12 to get better so just did that.
Later I discovered about the extra supporting supplements to go with it and so sourced and took them too. Over the years various Drs' negligence has nearly killed me and I've had to do all the research myself to get the treatment I needed and fund it myself, leaving me with a somewhat dim view of the NHS system.
I have gradually got better since thanks to the contributors on here and the Facebook support group.
When I was about 14 I was diagnosed as having a non-specific autoimmune disease so it is very likely I do have PA and I now have the classic symptoms of malabsorption syndrome too, I wonder if I should try to see a gastroenterologist. I have possibly found one but it's hard to get to see my Dr who will refer me and at the moment I have too much work to do and can't afford to waste time on fighting the NHS unless I'm fairly sure I'm going to die immenently if I don't!
So did you just have injections at first and did you also take supplemental b12 with the injections? If so, what kind?
Just 1mg in 1ml hydroxocobalamin injections to start with from the Drs. This wasn't enough so I used BetterYou B12 Boost spray and sublingual tablets as well. These were all methylcobalamin. I tried some cyanocobalamin sublinguals which tasted great but had no effect for me.
I took a multivitamin and mineral supplement as it had helped in the past.
I soon got folate, potassium and magnesium deficiency symptoms so took those too, with the folate as folic acid.
After a few months I was well enough to be able to buy my own jabs online and then got 1.5mg in 1ml ampoules.
These were much better and I could cut out the sublinguals... But in doing so I lost the methyl molecule and went down hill again seriously until I found methylfolate. At this point I also added in an iron supplement.
The following year I ran short of my iron supplement for a few days and this caused havoc. It took ages to get my iron levels back up and in the process I discovered I need lots of haem iron which is only available in quantity from red meat and fish so I try to eat these 3x a day.
My requirements and absorption rates fluctuate and so I have a job balancing everything but when I get everything right I feel well.
I almost died from Pernicious Anemia- I developed a tremor, couldn’t even sit up, had to lie completely flat on the couch. If I raised my arm I couldn’t breathe- that’s how little oxygen was in my blood. Eventually I did enough research (no help from doctors) and figured out was was wrong. I am still bedridden, but after three months of injections every other day my neuropathy is gone and I can do little tasks like washing a few dishes at a time. It took my life as I knew it from me, and I know the recovery it a long road ahead.
Wow, that is good you were able to find some help eventually. How long was this going on? Do you know how low your levels were and for how long? Are your legs pretty bad? Were you not able to walk? I appreciate all your information. Thanks so much!
What I have learned over the past nine months is that everyone with B12 issues/PA have different symptoms, while they generally have some in common, the severity is different for each person. My biggest problem is not being able to stand for longer than a few minutes at a time because not enough oxygen gets to my brain.
I got sick many years ago but it was a slow descent, barely noticeable- until July of last year I collapsed and was never the same.
My levels were always very high because I was on sublinguals, but they give a false high level. That’s one reason the doctors missed it.
I am in a wheelchair when I go anywhere now but it’s just because I can’t stand for long.
medium.com/@martinecotton/1...
This is a great article.
Wow - this is so helpful!
And it's sort of comforting to see I print that you are not alone in your struggles!
Thank you!
Hi!
It's such a good article, would it be possible to put up a link to it in a new post, please?
Bedridden. Me too. These last 13 years I haven’t seen any documentation at all on those of us who suffer from the effects of PA to such a degree that we are rarely able to leave our beds - or pay for it if we do. These threads/testimonies here are the first I’ve seen. Best wishes Tnhundley for health restored!
What specifically are you reasons for being bedridden? Do you have problems with your legs?
Meblue what is your story? Were you diagnosed with B12 deficiency or PA? You mentioned in a previous post that you didn’t know the difference.
I was finally diagnosed with Megoloblastic Anaemia (a form of PA) 13 years ago. Loading doses very briefly restored my health completely, but treatment with B12 shots after that was severely lacking, so I ended up seriously ill again, and back in bed. It’s too long a story to go into here, but briefly, in answer to your question. I do sometimes experience typical to PA neurological problems with my legs. However, I do not have any problems with my legs themselves that would keep me from walking. The problem is that they are weak (like my arms) from lack of adequate exercise. A secondary consequence of living with PA neurological damage, and other daily ongoing symptoms, that make it extremely difficult and mostly impossible to function normally. I’ve tried graded exercise and it made things worse.
Make sure you see a neurologist.
I started getting neuropathy in my legs soon after diagnosis of PA. But it turned out it was nothing to do with my B12 levels.
As it happens, there is nothing to be done for me, but at least I know it's unlikely to get a lot worse than it is now. But there are some causes that are easily treatable. So it's always best to get the cause confirmed by an expert.
What did it turn out to be if you mind me asking. Thanks for the information.
I was told it was Idiopathic Axonal Neuropathy. They've no idea what causes it, but it is common in very tall men in their late 50s. I got diagnosed at 59 and I'm 195 cm.
The neurologist was pretty confident when I saw him the second time as the progression was exactly what he had predicted. It means I will spend the rest of my life feeling like I'm walking on gravel (on bad days it's broken glass) and that I'll never have any sense of balance again. But it's not going to get much worse.
Hi Meblue, I know you private messaged me but I somehow managed to wipe any evidence of it! I’m a bit of a technophobe so can’t work out how to private message you back! Anyway I think my circumstances are probably very I different to yours. I had a very low serum b12 (85) but actually didn’t really have much in the way of symptoms except for fatigue. I had been on a drug (omeprazole) for 20 yrs and as that can deplete b12 levels I asked my GP to check it for me. As a result I had 3 b12 injections and my neuropathy came on gradually after the 2nd injection and terribly after the third. After several different specialist appointments and MRI’s etc it was decided that I had an auto immune reaction to the injections. The good news is that although I had over a year of horrible symptoms and not being able to walk more than a few yards I am now completely back to normal, it actually still feels miraculous that all those symptoms could go away after all that time that they were there but I am now completely back to normal. I do hope things can improve for you to.
That’s great for you. Strange that you had that low of levels and no symptoms. Thanks for responding.
Hi KathyN. I was diagnosed with b12 deficiency in January not from PA but from exercise. My level was 274. I had 3 monthy b12 injections so far and now my level is 950. Like you my numbness and tingling worsen after my 3rd injection especially when I lie down. I am due for my 4th injection next week and I am afraid to get another one. Does your paresthesia go away after continued injections?
Yes strange but apparently not as uncommon as you would think
I had numbness and tingling in my hands and arms for years, when I was at my worst last summer, I was pretty much numb and tingly from the elbows down, my feet also numb and weird, and I was staggering around, felt like my legs had nothing to give, I couldn't seem to coordinate them, I could barely get around the block, I also had so many weird skin sensations, waves of electric rippling down my back. And SO dizzy, double vision (I think an optic nerve thing), constant heart palpitations, severe unreality feelings to the point I felt crazy and thought I must have some kind of brain condition. It took about four or five months of 2 to 3x a week B12 injections for the weird skin sensations to finally leave, thank god that is finally gone, I haven't felt it in months. I walk fine now, just finished an hour long hike uphill. The heart palpitations are completely gone. The dizziness and double vision is much improved. I am back to work, a little slower than my normal pace, but I can work! I feel like I have come such a long way, but still get frequent tingling and numbness in my hands, and there is one patch on my heel that is completely numb and probably won't go away, which fine, I can live with that. The worst lingering thing is the frequent feeling of unreality and anxiety, it is now 8 months since I started injections, still 2 to 3 times a week, I have tried more frequent injections with no change. So I am guessing it could be some kind of permanent brain damage, which I notice is sensitive to low blood sugar and certain inflammatory foods .... If I manage my diet right so I don't get too hungry, etc., my mind does MUCH better. Good luck to you!
Thanks so much for your information. How many years did all that go on before you knew? What did your level turn out to be?
The numbness and tingling started about four years earlier, and I assumed I had carpal tunnel or something, or I came up with other excuses, thought getting old sucks. During the same time I'd have "episodes" of mental symptoms which would last a few weeks then get better. But because I never got anemia, I was never tested for B12 and never suspected that could be the reason. Then right after a "power red" blood donation (which now I know increases the demand for b12 to make new red blood cells), all my symptoms got dramatically worse over a four day period and I took myself to the Emergency Room. Still, no one ever checked my B12. I was given antianxiety drugs instead. I got worse and worse over the next four months, that's when it got so bad I had problems walking and seeing and thinking. It was only after getting a series of vitamin IVs to help heal from a surgery that I felt an improvement, and told my doctor, there is something in those IVs that is helping me, what could it be? By then of course, there was no point in checking B12 levels because I was chock full of it. But I did get an intrinsic factor antibody test that came back high positive. So finally an answer. And a slow road to improving with regular injections. It infuriates me that emergency rooms don't check B12 levels when someone comes in complaining of neurological issues and altered mental status. But if you don't have anemia, they don't. If a doctor had simply done that, I might have been able to reverse the damage.
I have been working myself up thinking back on how sick I was and how such an easy answer was overlooked. Over that four month period, I went to the emergency room a total of three times, I went to my doctor again and again and different specialists, endocronologist, even a neurosurgeon, begging them, please tell me what is wrong with my brain. I had just about every part of my body scanned, CT scans, MRIs, so many blood tests, urine tests, found other things that were wrong (like hyperthyroidism from a hot nodule). Still, no doctor ever thought to order a B12 test. I suppose I should count myself lucky to finally have an answer, and a way to address it, but still... I don't understand why its not routine to test for it.
It's crazy, isn't it!
That's great news - I'm glad you're getting better too! 😎👍
It seems from reading here - that my B12 being 942 last and only blood test for it is OK and not too high as my GP said - according to him 440 ml is where it has to be. I take 1000mcg sublingual B12 daily and have done for several yrs after having what I call nerve pain in my left leg - burning heel goes now as long as I take B12 tablet and also eat daily blackberries both os which were tips I found on an American forum on health, when asked re burning heel pain.
Researched a bit and learned blackberries blueberries and any black fruit is really good for us all. So I have a bowl of blackberries, blueberries, black pitted cherries with raspberries and strawberries for Slow K daily and if forget to defrost go without. Then get back that pain next morning - weaker but there plus also feel as if lost the heel too at times. Just got no heel on left leg.
I have had hip done but both legs are painful all the time and having had to wait almost 2 years for op - left leg ended up shorter.
Cant find why I have had this painful feeling in both legs for years - usually told arthritis.
My current doc has been a help in that also had fluid retention for years - tried all sorts of meds over last 10 yrs to rid me of it but only this doc has found the cure and cure in that left leg hasn't swollen for almost 1 year and right is down to a slight swelling around every 19 and expanding weeks - along with a steroid Solone started 1/2 a tab of each - fluid tab is called Dithiazide 25mg tab. Anyone with fluid can try this out - worked for me. Now down to 1/4 od each and just gone 21 days before topping up.
I have also taken green lipped mussel extract for pain inlegs for years starting in 1983 with Sea Tone. Last couple o mouths short supply no none gone out of business - and other makes of this simply didnt do the job - but a new on out now is working called Go and has 19000mg or 19g of mussel in each vege cap and I am taing 8 day and its starting to make pain disappear. Down to taking pain meds for sleeping only and even then 1 a night when was on 12 evry 24 hours Opoids - tried every single one under the sun I reckon and ended up on plain old 30mg tab of Codeine - no side effects - some of others - went home looked up inof and didnt fill the script as said tell your doc is had a brain injury etc and shocking side effects too. Anyway cut out the availability of plain Panadeine or Forte cant be bought OTC and GP's can only give you 2 seemingly a day - I had 4 and kept th approval thankfully but think if things go on - no swollen legs and Go green lipped NZ mussel extract - wont even need the 4 a day as accumulating them when first off was worried that would run out etc. So something is working for me.
I do also take 2000 IU's of D3 daily along with COQ10, Vitamin C 1000mg , Garlic , Ginkco, Magnesium, Mega B as well as a Multi vitamin.
GPs have always said dont need these just eat healthy meals but as our soils have been depleted by use of Round Up one part of which is causing cancer as they spray it over parks and grassy areas etc including school sports ground - and has depleted vitamins in our food world wide. So now GPs tell us to take some of the above vitamins.
Thanks for the information. Everyone is sure dealing with many issues.
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