I have recently received 4/6 of my loadind doses of b12. When I reached the 3rd injection, the day after, I started to twitch a lot mostly in my arms and legs but also the odd twitch in my back or neck (doesnt occur very often). I have read about nerves "waking up" so to speak, but the injections have caused the twitches as I didnt have them before. The injections have eliminated all other symptoms but I am stuck with twitching.
I have added potassium to my diet and am increasing my magnesium intake through foods today, but I was wondering if anyone else has experienced this during their treatment.
I have also had a slight decrease in coordination aswell but I am still able to do daily activities fine.
Yes, it's super early in your recovery and yes indeed, the nerves are waking up. During recovery, most people discover new symptoms along the way, or ones that flare up that weren't there previously.
I had all sorts of nervous system issues coming up and nerves firing in different areas of the body as they try to re-communicate with each other.
It could be that you were very close to experiencing those symptoms before treatment (they were on the horizon) and your body is sorting them out now. Or since B12 therapy resets neurotransmitters, so it's possible many of the nerves were dormant because they lost their myelin sheath and are coming back to life after recoating the myelin.
Don't be surprised if other symptoms show up along the way. Took me months not to have regular palpitations after treatment.
Sounds like you're doing all the right things and do try to push for more injections as you have neurological complaints.
thank you so much for the reply! I feel a lot better knowing that others have experienced similar issues and have overcome them. Just glad to know its nothing life threatening (Dr Googles fault lol). I wish you all the best and thank you for sharing
Ditto what Pickle500 said. It is called reverse something or other. Someone will correct me. That is where your nerves wake up and your symptoms start to reverse out. It gets a bit dark before the dawn kind of thing. My feet/calves and hands/wrists were quite painful but started to get better after a few injections, but then symptoms I didn't have came on, and are still lingering right now. It took my feet 3 months to go numb and tingly and they still are after 5 months. I am waiting for that to lessen. It may or may not. I do believe these were symptoms lying in wait and with the healing B12 they went a bit crazy. Like they were dying of thirst and are now drinking like crazy.
I tend to think that years or decades of dis-ease in our bodies creates toxins and dead cells etc, and that once they get the healing B12, new healthy blood cells begin to form, the old ones have to be pushed out of our system. That usually comes out in urine and skin. You could develop a sort of acne or rash. I did itch/scratch quite a bit on my right arm and shoulder for a while, but it is subsiding. I scratched myself into sores. Hard not to do. I do have some acne on my scalp but it seems to be getting better.
I imagine the cleansing process like this: Imagine you go to a crystal clear lake and you put your foot in and suddenly you see swirls of mud around your feet. You stirred up the settled dirt and toxins. That's how I imagine the toxins in our body are reacting to having healing B12. Our bodies are waking up and stirring up the old dead RBC's and other bad stuff and it all needs to come out somehow. But not without making us feel a bit worse before we feel better. Hang in there. You are just beginning. It will get better. It could take a while. It all depends on how long you had symptoms. People in this forum are awesome and someone is always here for you. They have been a life saver for me.
Yes that's quite a good analogy since B12 is a detoxifier as is Hydroxocobalamin specifically.
An acupuncturist I went to in the early days, when GP's said it was stress, told me I had 'alot of toxins in my body' after he'd done cupping on me. I know many people will think Eastern medicine a 'woo-woo' approach, but on reflection it made sense. I had gut issues and it's likely I was not taking in enough B12 to transport those toxins out of my body. Add to that various lifestyle issues like pollution in a city and moderate two a week alcohol intake and my body had depleting B12 levels and no chance to purge the toxins.
Plus, I think i read that the body needs about 3 months to create new red blood cells so if you were anemic this will be going on too and will take that long before things are working as they should.
That is 100% true Pickle500. And those dead diseased RBC's have to come out of our bodies and I believe the skin is the first sign of toxins. It is after all our largest organ. I have had cupping and deep therapeutic massage that is supposed to release toxins and even emotions from trauma. I was told I could find myself crying for no reason for days afterwards. I thought, What? but sure enough 10 minutes in and I was crying and not because it hurt. I truly believe she really awoke all the trauma in my body. I never experienced anything like that. I believe in Eastern Medicine.
yeah, I have had some issues with my skin recently and put it down to growth but im 18 now so was wondering when it would clear up. I really appreciate the breakdown of the deficiency. I can reassure myself now that what im feeling is fairly normal given the circumstances. I really appreciate the response, its helped a lot. Wishing you the best
Yes, I had terrible skin issues too which relates to your metabolism which will be out of balance because you're deficient.
Keep going with the jabs and see how you feel in a couple of weeks after the final loading dose. If you're not feeling better try to push them for more jabs if you can.
Gosh, you are so young. I'm sorry you have this condition. One of the things about this condition is that it can mimic other things or be excused for other things, like simply being 18 and going through puberty. I hope you have support around you. Do you have anyone that is learning about this with you? Someone is always here for support. No question is too stupid. I once asked if vertigo while gaming was caused by PA? Because suddenly I could not play Mario cart and found myself so sick I was in bed literally for 5 days. It was such extreme vertigo. Now I can play elder Scrolls but I have to limit myself. So no question is silly. In fact they help others who are afraid to ask them.
Some other things you may have trouble with in school. Maybe retaining what you read, fatigue, trouble reading, I find my eyes blur and get very fatigued reading. I am sensitive to fluorescent lights or simply bright lights. I also, don't like too much confusing noise. Irritability, depression, and anxiety is a big one for me. You might also catch shadows that might startle you while walking, thinking something is coming towards you. You could walk into door ways, misjudge steps. Kind of just be known for being clumsy. These things can be very subtle if at all or they could be something that really bothers you. Everyone is different. I am just trying to point out, even some of the tiniest things could be an effect.
im feeling alright its just a couple things previously mentioned. twitching is easing off very slightly but I am trying to assess my speech and it kind of drops on one side a little bit. Ive asked others and they dont notice anything but i think its just me overanalysing the situation. Thanks for the help
Scientist, not medic, but "waking up and stirring up the old dead RBC's"? Eh???
The red cells are replaced every 100-115 days or so. So, the 'dead RBCs' have already been dismantled and anything useful has been recycled to make new stuff. The stuff that's not recycled has been used to [trying to keep it polite here] 'colour our poop and pee'. I won't go into the breakdown pathways and products, but you can look them up if you're interested. Red cells past their 'sell by' date are destroyed at the rate of about 1% of our total every day, unless we have a haemolytic anaemia, in which case it's higher than 1%, and can be much higher, although the body will still cope providing it's got adequate stuff to make new ones.
Thanks for that. That is so interesting. So do you think that process, can cause you too feel worse before you feel better, if it's been that way for a long time?
As far as the old macrocytic red cells go, they won't mind one little bit and they'll continue being replaced at a good rate. The macrocytes are just big red cells and will transport oxygen just as well as normal-sized 'normocytes'. Once a deficiency has been treated, assuming it was making you anaemic, then the bone marrow will kick into overdrive, and be producing a lot more red cells than normal, and that will keep on happening until either you run out of something else, or your haemoglobin gets back to normal and your erythropoietin response damps down again. Typically, the full response can be seen within three days for a deficiency of B12 or folate, whereas Iron replacement takes a bit longer before the maximum respoonse can be seen. It obviously takes rather longer for your blood to get back to normal, but the changes can be quite rapid. Whether you'd feel worse whilst this is happening, I'm not qualified to comment but I believe that the erythropoietic response should make someone feel better quite quickly.
Yes, Dr Joseph Chandy (he was a G.P. who took a big interest in B12 deficiency) wrote about the ‘reversing out process’ in his book Vitamin B12 in Clinical Practice. So, nerves healing can produce different sensations for all of us from burning, stinging, twitching, feeling ‘jangled’ even static.
Good idea about potassium and magnesium. Glad to hear you are able to do daily living activities.
I had a lot more twitches develop (or worsen). I developed a jaw twitch during treatment which caused me to bite my tongue or lip quite badly on couple occassions. My jaw develops a crazy tremor when I hold it open for long at the dentist which I'm sure annoys him no end. I eat apples VERY consciously and carefully these days. I also upped Magnesium by 120mg just in case, but I think for me its just nerve damage than electrolyte imbalance.
i didnt have any twitches before the start of treatment but im also increasing intake of various things in my diet that have been suggested. thanks for sharing your experience
In between the second and third loading dose I had a terrifying twenty-four hour period, where I wondered if I should get medical attention. It felt like someone was zapping me with high powered voltage every twenty minutes. I paced for hours & got through it. Although I had had over a year of debilitating nerve pain pre-diagnosis, this feeling was a new symptom.
It left as quickly as it came. As did about 80% of my b12 symptoms not long after loading doses.
So it is always a who knows, but hopefully this gives you some comfort.
Hi. I’m new to this forum yet I already appreciate all the input -and admire Pickle 500’s enthusiastic replies. I found something that may help anyone with nervous issues. It’s called No More Cramps. Great for restless legs and nervous system issues. FYi, if you have a deficiency in magnesium then you will DEFINITELY have kidney (and thus nervous system) issues. I hope this helps.
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