After 2 years of shots--Still can only walk 50 yards--my B12 reading was 211 and the calves in my legs had muscle wasting and already had lost 40% of their muscle mass. I took weekly injections for about 18 months and the calves in my legs muscle came back about 65% and then stopped there. I am better then I was but still have leg pain and can't walk very far until the pain is such that you can't stand it. (my first doctor was going to give me 1 shot and that was all) The second doctor was much more up on the B12 and gave me a prescription for 52 shot weekly for one year. I believe if I would not have changed doctors that I would be in a wheel chair today. My B12 reading are about 700 to 800 now but the damage has been done and I don't know if I will ever get my legs back. I had a lot of nerve damage because when I first start taking the weekly shots, I would get electric shocks up and down my legs several times a day for about the first year. I wish there was something I could take now for the pain so I could just do some walking. thanks
Still can walk only 50 yards after 2 ... - Pernicious Anaemi...
Still can walk only 50 yards after 2 years of shots
That sounds awful for you. Do physio work with you?
Can you swim with less pain?
Massage. I expect you've tried everything.
So the right doctor
I wish you well
Yup.
I built up stamina by swimming twice a week. It has many advantages. You can't fall over. If you get tired suddenly you can just hang on the side. No matter how far you go, the car is a short walk away. It's never cold, wet (well...) or windy. There are always people with first aid training nearby.
I can ride a bike without much pain at all but when I apply pressure to my joints from walking , the pain is dull but very intense. Then if I don't stop and sit down, it becomes unbearable.
Pejka62. Just a thought...if your pain is joint related, has your GP investigated the possibility of rheumatic or autoimmune disease (autoimmune diseases - like PA - often arrive in clusters, so it’s entirely possible that there may be other underlying conditions causing problems.
Also - have you been referred to a pain clinic...they may be able to offer more (or different) solutions that may work for you.
Not entirely sure what you mean by 'nerve shock treatments'...but hope that you've at least been referred to or seen by a neurologist.
Serum B12 level of 700-800 is quite low for someone on regular B12 injections and also the wondering if you were ever prescribed the intensive B12 regime for those with neurogical symptoms (following the loading doses, injections every other day until no further improvement)?
In the UK, guidelines state that those with neurological symptoms (which you clearly have) should receive injections every other day until no further improvement. And for many people, the 'one-size-fits-all' maintenance treatment regime (injections every two to three months) is not sufficient for them to get and keep well (but that's maybe another story) 😉.
If your symptoms have a pattern of returning before your next injection, then improve once you've had that jab, the return before the next jab, and so on...you may well benefit from more frequent injections.
Good luck with whatever the treatments or tests are tomorrow. Let us know how you get on 👍
Do you take anything for the pain? I would find it difficult to do anything without gabapentin.
Have you been taking the cofactors? B12 uses potassium, folate and iron. You should be taking 5mg folic acid with each shot, lots of potassium through food, and making sure your iron and ferritin are at optimal levels.
Tnhundley. For clarification...it is not necessary to take 5mg of folic acid with every injection of B12.
5mg doses of folic acid are only necessary for those with a proven deficiency (diagnosed following blood test and prescribed by a GP) and then only for 3-4 months, until the deficiency is addressed. The usual maintenance dose for folic acid is is 400mcg daily - unless on medications that impede the abosption of folic acid (e.g. steroids et al), in which case an appropriate dose is determined through regular blood tests.
Over supplementing with folic acid (and 5mg is for most people) may produce upleasant side effects (insomnia is one - check the Internet for others) and may be harmful, in the long term.
Anyone who takes methylfolate will suffer severe side effects if 5mg doses are taken (doses should start at 200mcg and work up slowly, if needed - again 400mcg is sufficient for the majority of people).
Clarifying this issue because we regularly see instances where people are taking hugh doses of folic acid and/or methylfolate on a long term basis, and hence over supplementing...and suffering side effects, as a result.
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Foggyme What would be the main side effects from too much B12/folic acid? Although everyone may get different sets of symptoms, are there some key symptoms which occur whem taking too much.
I would be interested to know. Could chronic breathless be one of them?
Cetus
Here's a patient information leaflet. Lists the potential side effects of B12 injections. However, the listed side effects are also the symptoms of B12 deficiency, so there's much debate about whether these are repair effects or side effects. The majority of people here report that any initial worsening of symptoms abates as treatment continues - so for most, repair effects. Breathlessness not mentioned (though it is a symtpoms of B12 deficiency).
medicines.org.uk/emc/files/...
About folate/methylfolate - breathlessness (amongst other things) can be a symptom of over-supplementing with folic acid or methylfolate. Another common symptom is insomnia/sleep disturbances.
I note that some time ago your folate levels were over the top of the reference range (so unmeasurable) though in a recent reply you state that you are now taking both folic acid and methylfolate (potential double dosing).
So...unless you previously stopped supplementing and your levels dropped to deficiency levels (and hence taking folate again)...I’d look at how much folate you're taking...and consider stopping to see if this brings improvements.
Here's some information about folic acid and methylfolate:
drugs.com/sfx/folic-acid-si...
webmd.com/vitamins/ai/ingre...
About potential neurogical implications in long-term treatment / over supplementation with folic acid / methylfolate:
ncbi.nlm.nih.gov/m/pubmed/6...
ncbi.nlm.nih.gov/pmc/articl... (Review Paper: Folic Acid Benefits and Risks to the Nervous System) - PA / B12 deficiency section and conclusion).
So...possible over-supplementation with folate may be an issue (based on previously over range folate levels and continuation of both folic acid and methylfolate supplements).
However, chronic breathlessness can have many other causes so if you have not already done so, suggest that you consult your GP. Or seek emergency medical attention if things get worse (difficulty in breathing, cold and calmly, blue tinged lips/extremities, weakness/dizziness etc.).
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Foggyme Thank you very much for digging out those links and for your kind reply. I'm not on this forum as much as I would like be on account of my symptoms, so apologies for the delay in getting back to you.
It's interesting that side effects of B12 are also the symptoms of B12 deficiency. That's exactly what I have been observing.
I find folate (either folic acid or methylfolate) often helps a lot. If I have had a day with a lot symptoms and can't work out why, I sometimes find I get much better after taking folate which is why I drifted towards using methylfolate because I have seen it said that it doesn't cause harm in large doses in the way folic acid can.
However I think I should cut back on B12 and perhaps folate too after reading your information.
Thank you once again.
Are You sure that this all is due to vit b 12 deficiency?
Pain while walking and being forced to stop for a while could also be an effect of a spinal stenosis (claudacio spinalis).
Here are the two pieces of information that helped me. As stated above, the guidelines in the UK state that if there is neurological problems (which you have) you need injections every other day until no further improvement. If that is not done the nerves continue to worsen. I would get that handled immediately. The other thing that helped me was the kind of B12 I was taking. At first I took methylcobalamin for 4 years and after a while I noticed more numbness on my toes at which point I changed to hydroxocobalamin and within a few months it's almost completely gone. So the type of B12 you take is also super important. Good luck!!
You say the pain is in your joints. Have you looked into a low oxalate diet? I had wretched joint pain for years, not related to B12 deficiency, and hobbled like an old woman from it, it was embarrassing. The pain almost completely went away when I moved to a low oxalate diet. I mention it here because I had noticed lots of sublingual hydroxocobalamin made my joints and muscles hurt again like in my spinach smoothie (high oxalate) days, and I did read some studies that say the hydroxocobalamin treatment used for cyanide poisoning can create high enough levels of oxalate to cause kidney damage. I have noticed on this forum that sometimes people have mentioned joint and muscle pain as a side effect of B12 treatment, which in the UK is hydroxocobalamin. I am also curious if there could be some relation to oxalate issues and pernicious anemia, as PA causes low stomach acid, which in turn causes intestinal absorption issues. And having problems with oxalate happens because the oxalates in food aren't binding with calcium to be eliminated like they're supposed to, and get absorbed through the intestines instead... Or at least that's how I understand it. Sorry, probably overly complicated, and nothing to do with your issue if you have long term nerve damage. But you never know....
B12 loading
B12 Def caused with Nitrous Oxide dental procedures?
Can't believe it!- new gastro finally ordered IF and parietal antibodies without me even mentioning B12 - after countless years of suffering
Megadose of hydroxocobalamin
Overdose
