I am new on this forum and has just signed up for writing about my issues (i have been a reader since 4-5 months). I am a 23 year aged male belonging to and living in India. I had a foot slip on my home's staircase in January and had ankle sprain which was not completely healed and due to this I had to halt my regular workouts (which used to be pretty intense previously) all was good when the problem was with the injured foot( right one). Then around in September i started to get back aches first and during the same duration (not necessarily at same time or instance though) my thighs and upper leg areas (both the legs) had burning sensations even when am at rest. Intense feet pain in both feet while standing got started in October. All of this was being related to my ankle injury by my family members and physicians as well. They used to tell that the pain in other leg may be started due to imbalanced standing and all. Some physicians also got me tested for uric acid and treated me for it. I used to get vibrations in my legs below knee part even after walking a mere 200 meters. My left legs area below the thumb started to feel fleshless ( i cant understand how to explain to you guys about it, fleshless is the best i could do)
And here comes the good news, I went on searching about my problems on the net and could relate my issues with b12 deficiency as all other treatments failed and painkillers never worked even taken 3 times a day ( i dint use much just tried a couple of times). Some how i managed to get a b12 serum test and got results as 160 pg/ml in august's last week. The next day i went on to a neurologist and he put me on a b12 treatment and asked to perform certain other tests but the major ones are calcium and D3 levels. Well, i was deficient in both calcium as well as D3. Calcium was 7.6 mgs/dl and D3 was 13.8 ng/ml when i got the results. So finally my neuro put me on d3, calcium, b12 treatment. He asked me to get injection Archital 600000 International units consecutively for 3 days and after that 60000 IU tables for 7 days consecutively then per week 1 60000 IU tablet for 12 weeks (still running on 4th week). This was all about d3. Now for calcium i take daily two tablets of 500mg which has a combination of vitamin k2. Doc asked me to take these tabs for 6 months is it okay to do this?
Here goes the b12 treatment plan. The doc put me on oral tabs which also include folate, gabapentin, ECT plus which i take daily twice, the b12 tablet i use is of 1500mcg methacobalimin. And he asked me to get b12 injections twice weekly of 1500mcg methacobalimin dose upto 2 months, then once in a week upto 6 months. At the time of writing this post i have finished the 2 months loading phase. I have been feeling a lot better and that fleshless thing was gone in a week itself. My feet still pain (not that intense though) when i stand for long periods. The burning sensations were gone too. And now when the time for shifting to per week once injections i feel like my symptoms are reappearing (not intensive like as previously they were) and i feel it after 3 days of injection, previously i used to get ache in my feet even when am sitting on a bench and placing my feet on the bench support rods as all of us do. I met with the doc today he asked me to get injections twice a week again for 2 months. My bums (its like aching bone not muscle) still ache when i sit for long on bike or an other hard place.
Guys help me out, i dont understand if i got permanent nerve damage. and how much time could it take me to get out of all these deficiency symptoms and effects. I am eager to know about other patients with multiple deficiencies and recovery times. And i never had memory issues, all is fine with my memory. In fact i have some portion of Qur'an memorized and its intact, no issues in recalling it. I feel drowsy sometimes and this drowsiness issue has been since a long time like for 6-8 years in mid day time when i was in school and college. I used to feel like keeping head on my desk and sleeping.
Thanks in advance for reading my long post and responding.
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AbdusSaboor
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You will eventually get some replies from members of this forum who are real experts . But I would like to respond to your question . Have you had a test for Pernicious Anaemia - the Intrinsic Factor test ? It is not a very reliable test , but better than nothing . Also if you have been B12 deficient for a long time , it will take a long time to get rid of all your symptoms , and it may never be 100% recovery ..You have to be patient . You don’t mention any test results for your folate (vitamin B9) This vitamin acts together with B12 . If you are deficient , you won’t get optimum results even with supplementation of B12. This vitamin is obtained as folate by eating leafy green vegetables , or in the form of folic acid in tablets .You don’t mention if you are a vegetarian or if you follow a vegan diet , but I would have expected your doctors to have questioned you on this . Vitamin B12 is only obtained from animal sources - meat , fish eggs and dairy . But if you have Pernicious Anaemia as opposed to straightforward B12 deficiency , you cannot absorb it in your stomach due to the absence of Intrinsic Factor .( its an auto-immune disease ) The same anti- bodies which deplete the Intrinsic Factor also deplete stomach acid which is needed in the absorption process of B12 and other vitamins and minerals .
Also certain drugs can inhibit absorption of vitamin B12 , which is the most difficult vitamin to absorb .( google to find out- there are quite a lot)
Whatever, I think that you do have to have patience and continue with your treatment . I wish you the very best .
P.S. I have almost fully recovered from my B12 deficiency ( I had Pernicious Anaemia ) after almost 3 years on weekly self-injections . But my feet are not 100% recovered , and may never be so , but the numbness has gone thank goodness and I can drive my car . With P.A. one must have injections for life .
I have meet almost every day, and my doc didn't ask for folate test he just put me on with folate tabs (5mg twice in combination with methacobalamin 1500mcg). And no, he didn't test intrinsic factor though he mentioned it as a cause. Thank God I can drive cars so that means am not that deficient as u were. I feel comfortable now unless I am standing bare foot.
As wedgewood said, it may be worth getting the intrinsic factor test done although if you do be aware that it gives false negatives almost half the time. So if it comes back negative it does not mean that you do not have PA, it just means the test didn't pick it up. Keep up with the treatment regime and remember to be patient: sometimes things get worse before they get better but they will improve eventually, even if they don't disappear entirely (it's possible for some level of nerve damage to be permanent). If you have PA, of course, your treatment will have to go on for the rest of your life and you may need to do a bit of experimentation to find out what interval between injections is best for you - that's something I'm still working on. Good luck with everything and I wish you well.
I will try to take a test for IF. I have a question. can I perform my regular workouts? I don't have any issues with energy and all its just with feet. but iam worried that it may become heavy for my body. my doc though asked me to resume my workouts from after a month of starting treatment.
how do I understand and experiment about when I need a shot as I have read that symptoms increase even when body is getting repaired.i can't get clear understanding when I need the shot and when body is being repaired
The general understanding is that first you finish the loading course as prescribed by your doctor (I presume you are now in your once-a-week treatment phase) and then see how you feel. It may take months to get some improvement, before which you will probably feel worse for a little while. So finish your course, tracking your symptoms as you go. Presumably your doctor will then recommend continuing injections at longer intervals so then you will need to note how you feel every day and take notice of when they start to get worse again to give you an idea of when you should be getting the shots. With me I went to three months, then pulled it back to every two months and have now settled on every 7 weeks because that's when I start to go downhill again. With others they find symptoms return after a few days. You won't really be able to make that decision until you finish your current treatment regime. Good luck!
as I said I have already done shots twice a week for two months and with this I felt a lot of improvement , then doc asked me to jump to weekly one shot and I did it almost a month. it was all normal for me apart from the initial days when I changed the regime but suddenly 3-4 days back I started getting worse pain and discomfort in buttocks and burning in the lower body. shall I start frequent shots again??..
update: I constantly feel sick now. I have started 3 days regime again let's see if it helps. also I have stopped taking gabapentin and ect plus a month ago could it be the reason?
I think it's a good idea to increase the frequencies of the shots again. Keep going until you feel better again and then maybe trial stretching the interval out by one day at a time (eg if you're currently injecting once every three days, try it at once every four days and see how you feel). Sounds like once a week isn't enough for you. Sorry, I can't help on the question of your other medications but I suppose it's possible that there is some sort of link. A pharmacist should be able to give you an idea of interactions if you don't want to go back to the doctor yet.
I can only speak from my own experience but I can't see any reason to stop you from doing your regular workouts. What you may have to do is assess how you feel after you work out to see if you need to drop the intensity back or can proceed at your regular levels. I've had to drop the intensity back a little to cope and there are days when I don't have the energy to do anything but I now just accept that and can usually get back to it after a day or so. I still do weights 3 times a week and have begun swimming again twice a week so if I overdo it I'm not far from the car and the short drive home. So I'd say go for it and monitor how you feel so you can work out the best intensity for you.
thanks I started workouts a month back but couldn't focus , I feel okay with workouts. and I am going to start may be tomorrow again. I have used a weight gainer powder three times long ago may be one and a half year or so. Is there a chance they could interfere with b12 absorption?
I'm not medically trained so I don't know but if they're protein powders I can't see that they would. In any case as you're having injections the b12 will go straight into your blood stream so the powder shouldn't make any difference.
am not taking that now, what I meant to ask is that I used to take them long ago. so wanted to know that as a side effect could they effect intrinsic factor or such things
I doubt it. I'm not medically trained but I am a scientist and I can't see how taking the powders could have affected the autoimmune system and thus production of intrinsic factor resulting in b12 deficiency. Maybe it's worth asking around your family to see if anyone else has had it, or if any of your ancestors might have had it - there is a genetic link to autoimmune PA in many cases, including my own (inherited from my father). Re your earlier question, I only get injections once every seven weeks at the moment to maintain my levels after all the loading doses four years ago. I think it's about the right spacing but I'm still monitoring it to see if I need to make it any more frequent.
oh thanks, none of my family had it or may it not have been recognised. there's one thing though, I suffered with high typhoid range in my 19 and had to be indulged in so many medicines. also my mum says I didnt ever drank her milk as a child. idk if these could cause issues, do u have any idea?
No, can't help on that question - you would be better off asking your doctors. I do know that the autoimmune issue that causes PA can arise spontaneously, it doesn't have to be genetic.
people rarely come back to old posts so I would advise starting a new post that refers back to this one but also updates on what may have happened in the last 2 months.
Raised anxiety is one of the symptoms of B12 deficiency so it may not be helping things and it could be hindering communication with your endo.
people vary a lot in how frequently they need maintenance shots. In the UK the treatment protocol is to continue loading shots until symptoms stop improving. recommendation is to review at 3 months. Nerve damage can take a long time to heal.
I am taking weekly injections of 1500mcg mecobalamin for maintenance or whatever it is, even a day or two more gets me into troubles like weakness in legs and kind of anxiety which last like 3 days in short busts. is it this way if I miss or delay the dose?
he asked me to take twice a week if symptoms increase or any such thing. also I want to know that if b12 plays a part in extreme feet pain so that I couldn't even stand still for 10 minutes. and also I don't exactly know if it is anxiety.
I can only share my own experience on this. I believe I have had problems with B12 levels for decades. Many of these problems actually got a lot worse in the year after I was diagnosed as having a b12 absorption problem. I believe this is because I'm an outlier in terms of need for treatment and I was being chronically undertreated, leaving me starved of B12 at the cell level. My justification for believing this is that things changed dramatically when I started treating myself with large doses of B12 - mix of nasal spray and additional injections.
In the period before I started treating myself my ability to cope with stress was extremely poor - leaving me with high levels of anxiety. This was improved by using mindfulness meditation techniques - so may be worth investigating that option yourself if you don't currently have a meditative practice.
I also found myself experiencing extreme pain in my feet when I was standing and walking. I had had problems in the past which had been corrected by using an orthotic insert in my shoes - implying that the problem may have been week muscles in my feet leading to tarsal tunnel syndrome. I do have fallen arches. I was finding that I was more comfortable trotting than I was walking. I was also getting very unsteady on my feet and actually preferred being on a bicycle - implying that it wasn't an actual balance problem. Both of these problems also disappeared when I started treating myself ... in fact I find that I live in sandals in the summer now without the need for orthotics.
In terms of my B12 regime I use a mix of
- methyl (a nasal spray) as that works quite well for the loss of feeling I experienced in my left foot as a result of the fall that resulted in a broken ankle that was the event that lead to my diagnosis. Before my left foot felt like a lump of meat rather than a foot
- adenosyl (sublingual) which improved my urinary continence and also helps with my mood - methyl does nothing for my mood
- hydroxo/cyano (injections). think cyano seems to last longer for me but don't really find much difference - I probably do this about 3-4 x a week depending on whether I'm likely to working (paid) or doing something very physical in the day.
I use the methyl and adenosyl daily - and also have a hydroxo nasal spray that I can use. These are as top ups. Generally I have a dose of methyl in the evening and adenosyl in the morning as the minimum and then top up as and when I feel the need.
I have recently developed a thyroid problem which I am still struggling with but it does seem that going back to the meditation and using more B12 is helping to manage that but still have a bit of a way to go.
The bottom line is that we are all individuals - genetics and environmental factors will all vary and impact on treatments and how we respond to them ... and at this point the genetics and environmental factors and how environment and genetics interact really isn't well understood.
It sounds as if you have a good doctor who really is trying to work with you to get the treatment that is the best for you so talk to them, tell them how you are getting on - what symptoms you have. You might find that trying some adenosyl or another form of B12 might help - it is possible for genetic factors to impact on the ability to convert methyl to adenosyl so if you are in that category it might help to use another type of B12 as well.
And I really would recommend some time of mindfulness/meditative practice if you are experiencing problems with anxiety, even if the cause is related to B12 - we all have stresses regardless.
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