does anyone else find either of their arms goes very weak and feels like you've been laying on it
till it goes dead? i lose feeling in my right arm, wrist and hand and have it just hanging there like a spare
part! does this make sense???
weak arm: does anyone else find either... - Pernicious Anaemi...
weak arm
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anjie48
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One of my early symptoms was weaker arms. They didn't feel like they went to sleep, like yours do, but they were definitely weaker. My legs also got weak later on, and I was starting to have problems walking. It's all better now, and my strength is back to normal (and still increasing), now that I've been getting lots of b12 (and more protein, omega 3's, etc.).
I'm guessing that your problem is different than mine though, since yours is only on one side. Mine was in my spinal cord, and affected both sides. I'm wondering if yours is from a pinched nerve, but you didn't mention any pain.
I just looked at the webmd symptom checker, and peripheral neuropathy came up as the most likely problem. So probably not a pinched nerve.
I have found the same thing, also lost weight and muscle mass, would you recommend protein and omega 3 ?
I'm not a doctor, so I don't want to make any recommendations. But I'll tell you what happened to me. I wasn't eating enough, so I wasn't getting enough of anything, including protein, omega 3's, calories, etc. My appetite was decreasing, and I lost quite a bit of weight, muscle mass, and strength. And that's about the time I started getting my b12 deficiency symptoms (or at least the worst of them). Then I started eating more, making sure I got enough protein (including all the essential amino acids, which is critical), and also omega 3's (I still don't think I get enough of these). My appetite started improving. And my muscle mass started increasing. It was like I was lifting weights at the gym, except I hadn't been there for a while, because of my health problems. Now everything's back to normal.
The way I understand it, you need both muscle mass and enough healthy nerves to make them contract, for physical strength. If you don't eat enough protein, your body will take it from your muscles, and you'll lose muscle mass. And if you don't get enough omega 3's (among other things), you may have a problem regenerating myelin, which insulates some of your nerves. And without this insulation, the signals passing through your nerves will cross, similar to shorted, bare electrical wires. And this will cause things to get confused and malfunction. I'm pretty sure this is what happened to me. Anyway, I hope that helps.
I should also have mentioned that b12 is one of the other things you need to regenerate myelin.
Mine was diagnosed as carpal tunnel due to low thyroid. I was given some hand splints to wear at night, it stops the arms going to sleep 98% of the time. Ask your gp.
Interesting - I had problems with hands that were sign of gradual slide on B12 scale that were diagnosed as Carpal Tunnel and yes the splints help though generally I can manage to sleep without them now because I've managed to get the body to know what position my wrists are in.
I do occasionally have problems with the whole arm these days - similar to what anjie discribes and think that is down to something similar going on in the neck as I find straightening my neck and changing my position definitely eases it. I think it has stopped though since I started using a methyl spray as well as hydroxo spray (nasal) as don't remember it happening for a while and the point at which it would stop is consistent with the point at which I started to mix the two ...
Had and still having the same problem, doc put it down to nerve damage caused by arthritis in the neck, turns out it's vit B or the lack of it. Only found the problem when I saw another doc after complaining of burning toe joints and feeling like I had been run over by a bus.. Anyway had the usual loading dose and due for a top up soon. Still feel worn and the pains in the toes although they tell me my blood test a few weeks ago are normal.
Yep - I get this. Mostly left side and for a while I thought it was only one side but I have had occasions it has been the other side x Mine seems to run down from my head, neck into arm (all mostly left sided) x
This was one of the first symptoms I had (right arm), along with tingling and spreading numbness in various parts of my body. I was 16, so no-one took it seriously, even with a family history of autoimmunity, including PA. References to GPC antibodies appeared in my medical records soon after, and fairly regularly over the following years, but no doctor told me about this or treated me for PA until I was 30. 
I know this is an old post, but i would love to know-did this symptom come and go when you were younger? I had hand pain that would flare up about once a year starting at about 25 and then a couple months ago I started with a spreading numbness that left my right side kind of weak and then tingling in fingers and toes but my hands have this fumbly feeling that starts in my back. I had an MRI of spine and head that came back normal but trying to get a test for B12 currently to figure out what is wrong with me. Just wondering if this sounds familiar to anyone
I did have arms going numb at a certain stage, sleeping, long ago now, and numb patch on back of head, all gone now though..
I developed weak arms long before I developed clear-cut neurological damage. Unfortunately I put it down to gallstone pain and didn't discover how awful they were till after I had my gallbladder out. I was mystified by how slow they were to get 'better' after the op and my greatly improved diet. It was only after I was diagnosed with trigeminal neuralgia and got B12 injections that they started to improve. They now feel fairly good but not quite normal.
My weakness, if it helps, meant I couldn't reach for anything off a high shelf. I couldn't take the weight of anything above my head. I couldn't move hangers on dress racks above shoulder height. I couldn't carry shopping or sweep floors without exhaustion. Anything that was actually heavy, like a bag of soil or a family sized bottle of Coke couldn't be lifted off the floor or a shelf. If I was given it to hold I could just about manage it, but I couldn't heft it myself. I had difficulty with strong or heavy doors. I couldn't remove jar or bottle tops at all. The list of things I couldn't do was endless!
That and very cold hands and feet are the only 'physical' neuropathic symptoms of B12 deficiency that I am aware of ever suffering, but the arm weakness was the most pronounced.
P.S. And urinary urge 'incontinence'. That went away after B12 injections too. And I had thought that was just middle age!
I can hardly believe that isn't me writing, these symptoms are all mine, down to the incontinence too. I am currently supplementing 10,000iu B12 as doc won't give me loading injections as my levels are within range B12 239 (200 - 900)!!! I hope this will also sort out the pain I get in my right foot every night from the instep to the big toe. I am hypothyroid, and do not have PA. I might have Hashi's as I have other autoimmune diseases, but not got test results from endo a yet.
Oh, that level is very low, Barb. Seriously. I had 384 and was treated. Of course, I did have a big fight to get it and I had to provide a dossier of evidence showing there was a good enough argument to merit treating me, but I did get it, and it did work. If you have enough symptoms then you should ask to be treated properly, especially if you have anything resembling neuropathic pain or dysfunction. The lowest level in Japan is 500, under that it is considered deficient and needing treatment. I think you need to give your doc the dossier treatment, Barb!
I took the tick list from online for B12 symptoms and ticked all those that I had. This was a big surprise to me that I had so many of them and over half of the neurogical symptoms. I showed this list to both my gp and my endo and both told me I was in range. I told the endo I could see that but as it was only just at the bottom of a very wide range and since I have so many symptoms I really thought I should be treated. He told me I would be ok and the T3 he had just agreed to give me would help my symptoms as a lot of them are the same as hypothyroid. I told him that, in that case, I would begin supplementing myself. I have been taking 10,000iu B12 methyl for a week now. I was going to take this level for two weeks and then cut back a bit but have decided to carry on with the higher dose until I feel some improvement. Unfortunately I think some of my symptoms have been part of my life for so long they will now prove to be permanent damage.
So over the past 25 years the medical fraternity have been 'treating' me to ill health and disability. Now I am taking responsibility for my own health I hope to go some way to recovering some quality of life. Wish I knew all this info 25 yrs ago 
I think blood tests only test your levels up to the point where b12 gets into your bloodstream. But they don't really test what happens after that, or at least not very well. And a lot of important stuff happens after it gets to your blood. So for example, if b12 is getting into your blood ok, but isn't getting from your blood into your cells correctly, a blood test may not show there's a problem.
Also if the methylcobalamin doesn't work for you, you might want to try hydroxocobalamin. If I understand it correctly, it's easier for your body to correctly regulate hydroxocobalamin, so it may be safer. There's a lot of discussion on the internet about the differences, and a lot of disagreement on which is the best form. So I think it really means that different forms work better for different people.
Well since my blood B12 levels are so low I would think it follows that the cell levels will be insufficient. I also don't convert T4 to T3 very well so the endo has added T3 to my thyroxine. My VitD was also hitting the floor so gp has given me 4000mcg D3 daily and also Ferritin and folate were way down so am now on 420mg Ferrous Fumarate. I have to say since I started the D3 and ferrous fumarate I am beginning to sleep better and can manage to do more housework etc. I still cannot manage to do all I used to but tiny baby steps and all that.
I was just trying to point out that doctors seem to be relying on blood tests, that are only good at testing part of our b12 processes. And it's like they don't understand how dangerous that is. I think it's good that you're taking responsibility for your own health. Especially with something like this, where lots of doctors don't seem to get it. I think one of the problems is the drug companies who probably control the protocols that doctors are supposed to follow, can't make as much money selling b12, since it's cheap and they can't patent it.
Yes, I understood what you were saying about the blood tests. It works the same for the thyroxine as well, that was what I was saying.
I totally agree about the pharma's. Doctors are beholden to them, probably the backhanders!
Hi Barb. Yeah it's a serious difficulty many people have, getting treatment for 'grey zone' figures, but yours really is concerning. Much more so than mine. If you are feeling bold you can, of course, inject yourself. That's what lots of people on here do. Perhaps if you asked your doc to teach you how to do it, it would guilt-trip him into treating you!
But if you are a big scaredy like me, you can treat with sublingual drops - that's definitely a more effective style of treatment. There's also patches and nasal sprays, I believe. Couldn't vouch for those, though lots of people use them, I think.
I'm afraid I'm a B12 zealot and zealots always believe that they are saving the world from themselves! But I had a lot to lose with my treatment; I think that does make a difference. Nevertheless, convert zeal aside, I do think you should think carefully if you are showing anything that could be nerve damage; that's a 'no back door' job!
Chancery
Yes it's the nerve damage bit that gets me. Can't imagine what the docs are thinking of. And I'm happy to say I'm no scaredy-cat, lol, I am quite happy injecting myself. The only problem I have with that is the cost. I presume I would have to source injections abroad. I cannot use patches, I have had various different patches before and I always have the same problem, allergic reactions to the sticky stuff. I am not a fan of nasal sprays. I also have a problem with sublingual tablets or sprays. I have an autoimmune disease called mucus membrane pemphigoid which causes blisters and ulcers in my mouth and these things set it off big time.
Barb
Ooh yeah, they would. That was my big complaint with sublingual; it didn't half give me a sore mouth, and I don't have an autoimmune condition affecting it.
I hear you on the cost of injections. That's why I was so determined to be prescribed by the NHS! But I think people here do get supplies in the UK. It's an Oxford company (?). That's either its name or where they are based - I forget. Certainly if you put a thread up asking where you could get UK supplies they'd tell you, I'm sure.
Lucky old you not being a scaredy cat. My partner keeps telling me not to worry about the doc pulling my injections, we can just buy them ourselves, and I keep telling him no, it's the principal of the thing when really it's just sheer cowardice!
Chancery
You really are a big softie, hehe. I your partner is so kind why not ask him to give you the injections? You're obviously not needle phobic or you wouldn't have been happy having them at the surgery. Mind, your partner might be just as big a softie as you when it comes to sticking you with a needle.........
Think I will try asking on another post about the injections, see if anyone knows of a UK supplier and price.
Barb
Hah, he's blood phobic. We're a pair! But yes, I could probably bully him into doing it. Thing is, he's so clumsy I think I'd rather do it myself, even if it was in a state of terror!
Good luck finding a UK supplier. X
Chancery
Thanks, you actually made me laugh....... the thought of the pair of you - you holding the needle with your eyes closed through fright and him with his eyes closed through terror of blood....... but there really shouldn't be any blood.
Having said that, I did once get a very small spot of blood when I injected myself and hit a very minor blood vessel close to the surface.
I have posted a question for info about suppliers
Barb
Oh yes, we're a comedy duo alright. But actually there's always a bit of leakage (sounds like an incontinence ad) after a B12 injection, depending on how well it's been done. It looks for all the world like blood because it's red, of course. He would doubtless keel over at the sight. And keel he does, incidentally; I've seen him in action once after he had to give blood for a urinary infection. We got as far as the corridor before he fell over flat on his back. He's six foot one so a fainting fit is no joke when you're trying to lift him. He once passed out into the bath (empty) when he cut his hand and saw the blood in the sink. He tells me he always used to faint after giving blood too. Apparently, it's actually a shock reaction and he can't help it; his body just does it, but let's face it, it's not the most masculine trait - poor soul. I really should have traded him for more of a James Bond type when I had the chance. It's too late now; they'd only put him down!
Have you considered just taking it orally?
Numb, is that me you're talking to?
I am currently taking 10,000iu methyl in tablet form. Still trying to get gp to give me injections as I have numerous neuro symptoms.
I'm really sick of having to fight for every little thing!
Barb
Yes, sorry about that. I read your post, and forgot you were already taking the oral methyl form. I still wonder though, if the hydroxo form would work better. And I know it must be infuriating when you know what you need, but your doctor won't listen. When I first started researching all this, and read a bunch of stories like yours, I decided to h*ll with it, I'll just do it myself. I figured the risk of delaying treatment, while waiting for a doctor (who may not speak much English) to diagnose what I was already 99% sure of, was worse than the risk of doing it myself. I wouldn't normally recommend doing it that way, but I was a vegetarian for years, and realized if I wasn't b12 deficient now, I would be soon enough.
It really is a problem isn't it. So if the ranges are 200 - 900 and my level is 239 then I am not deficient, despite having enough neuro symptoms that they are well aware of and have been for years for some of them. I believe the injections are hydroxo and am looking at injecting myself. It will all come down to the cost as I only have my pension. I will keep on at my gp though - 'wear them down' is my new motto,
• in reply toBarb1949
Re:" So if the ranges are 200 - 900 and my level is 239 then I am not deficient, despite having enough neuro symptoms ", at that level you fall into the so called grey area and further testing is recommended tests such as active B12 and MMA, with neurological symptoms treatment is to be started, all in the new guidance, see:
bcshguidelines.com/document...
Barb1949• in reply to
Marre, I took a copy of the new guidelines to the gp and the endo who decided he needed to treat the low T3 first! He had the idea I was ok at that level despite me taking the tick list with all my symptoms and over half the neuro ones ticked. That's why I told him I would self medicate.
Same thing happens to me all the time Anjie28 .. It is a real strange experience. It is like sometimes the whole arm and hand and sometimes only halve of the hand, halve of the arm and some times only the one side of the body and sometimes both sides. When I say sometimes , I mean it happen more often then not, if you know what I am trying to say. Regards
Yes! I think its the nerves in my neck swelling and causing everything to be pinched. I've been icing my neck and shoulders 3-4 times a day and it has helped tremendously. I'm 4 months in to treatments, and I don't know how long it will take to heal. But try icing!
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