Hi all,
So I have been on b12 injections since August last year and due to pins and needles and no improvement in symptoms went to injections every 8 weeks. Most symptoms much better but I gave twitching all over when resting including face and tongue. Never constant twitching just random several times a day. Does anyone have Twitching? I have health anxiety so I am driving myself nuts that it is something like MND.
Repair of neurological damage can be very confusing. To get some control back and hopefully get rid of some of that anxiety you should be keeping a logbook of all your symptoms. Twitching is hard to figure out. I had some a while back but none recently. I’ve also had cramps especially in the legs.
I’m not medically trained but I’m thinking that random stronger signals from the nerve repair is triggering muscle movements. If you track when these symptoms occur relative to your jabs, you may see they peak at a specific time after the jab. Knowing they may happen will help you not freak out when they show up.
Exercises, if you can figure those out for the twitching muscles, mainly range of motion exercises, will stimulate the nerve repair. You may see things get better over months. It may actually get worse before getting better.
But knowing that they arise from nerve repair and are therefore good symptoms may relieve some of the anxiety.
The logbook will also help build up some evidence when you need to ask for more frequent injections.
Treat the injection as day zero each cycle and count from there. Compare the severity of the symptoms on day 1 to day1 in the previous cycles to monitor progress. Day-to-day comparisons just confuse.
Repair of neurological damage is very slow like months and years.
Are you supplementing with folic acid and a daily multivitamin?
I'm not currently taking any vitamins but following on from everyone's suggestions think I may start vitamin d3/K2, folic acid and magnesium. Thank you
As pvanderaa said, Log Book, Log Book, Log Book, it can’t be accentuated enough. Even if you aren’t taking meds or supplements, it gives you credibility with your doctors that you are staying aware of what is going on with your body. It also shows any initiative you have taken with over the counter supplements to see if you find any improvements or negative effects with them. It gives your doctor a place to start besides at zero. Be sure you don’t over-do-it on the Folic Acid, maybe have that checkered regularly at first so you have an idea of how much is working in the sweet spot.
Thank You, I'm going to start logging symptoms, it will be interesting to see if there is a pattern to them of see effect of otc vitamins
I think you may surprise yourself as to what you figure out on your own. And still always a great thing to have at your next clinic visit! You got this!!!!
Hi!
I find when I’m stressed out the twitching starts and I take magnesium bisglycinate. Two days later it’s gone completely. i find since I’ve started taking vitamin D I need the supplement. I was doing fine with epsom salt baths but they weren’t cutting it. I did try and cut out 2 injections out of three for a while and that’s when it started. So it’s hard to tell if it is the magnesium but I am going to try cutting that out for a few days and see how it goes. It’s a game of trial and error.
That’s really helpful thank you.
My calf muscles have been twitching continually for five years, since before I was diagnosed with B12 def. & despite a year of every other day injections, it hasn’t changed. I make sure I eat plenty of magnesium rich foods, but maybe I’ll try a supplement 😊.
Have you been able to try any of the topical sprays? My mom uses them with great success and they seem to work quite quickly. If you have trouble finding them, let me know and i can check to see what she uses. I had about a year of those and understand how nagging they can be. Just utterly distracting!!
Ok, thanks so much for the advice, I’ll try it 😊
Good to note, as with different form of B12, there are also different forms of Mg. Since they are relatively inexpensive, it is a little easier to try the different kinds. The most agreeable form is Magnesium Glycinate. I am allergic to life it seems (lol) and Pure Encapsulations seems to have the least amount of additives to negatively effect us, so we can know for sure it its the Mg compound and not an additive put in by certain brands we are reacting to. I hope this helps you find the right one for you!!! My health doesn’t always allow me to be on every day, but I try to check in at least once a week if not more.
Then I appreciate you taking the time, thank you. Wishing you all the very best.
Hi I have this all over my body in my tongue face ect I’ve seen 3 neurologist non are concerned so relax but do talk to your gp.
Twitching in mnd is after muscle loss as it is dying I’ve also been told by a neurologist that people with mnd don’t feel the twitches xx
That is a relief as i definitely feel them!
They are an early sign of damage and most often felt around the orbit of the eye and behind the eye, but can be felt anywhere on the body. My neurologist also made sure to let me know that after treating for a while and they stop happening, they may suddenly reappear as greater amounts of damage are being repaired. She wanted to make sure it didn’t scare me, like something was wrong again.
Thank you for your reply, I have to say it does scare me but they only started after treatment began so I hope that's a good sign that b12 is repairing the nerve damage and that the twitching is just evidence of that x
When mine started, they were severe and seriously affected my daily life. I started with Pure Encapsulations Magnesium “Glycinate” recommended for accompaniment to repairing nerve damage), using them by off-lable usage after studying hundreds of research study findings. To be blunt, I have been able to use my BM to determine if I am taking too much or not enough of certain supplements. When everything was perfectly normal, I had it right. But I also went for regular blood testing to see that my numbers were within the normal range or it I needed to adjust them.
Hi!
It’s been 6 months since i was diahnosed with b12 deficincy. My muscle twitches are also present. They are less intensive and frequent. But they are still here. Don’t worry. I know how you feel. Some people have permanent twitches after b12 def. For some people they go away. Just relax.
Once you have repair to the point you are having twitching, you will need to be sure you add supplementing of magnesium, potassium, D3/K2 and a few others. Your body is operating on a high enough level that it is using these things in higher amounts now. Exactly which ones and how much varies from person to person, but you will certainly notice a difference. My neurologist also added Curcumin at that point and I felt a difference straight away. I would recommend talking to your doctor about which ones they are okay with you trying, as some can have contraindications depending on other things you may be on. Best of luck!! Our struggle is real.
I will speak to my GP, she did say that she wants to retest my vitamin D in August when it should be at its highest. Maybe I need to be taking vitamin d, which since your post I have read affects calcium and magnesium absorption. X
I did have to start up the calcium (which you must be careful about because you can over-do it and can’t take it within at least 8 hours of Vitamin C.). I found with Mg, I gradually had to increase the amount I was taking that paid off with big improvements.
But keep in mind, I am also dealing with Pheochromocytoma, so there is a lot of calcium usage going on with the gated channels alone.
Thank you for all your replies, it really helps xx
I started really twitching after I started supplementing with a 5000mg sublingual while waiting for my first injection from the GP. I also did too much physically at the same time. 8 months down the line I still twitch all over but on a good day it is one an hour whereas it was about one every second before. Happens when I am resting mostly I.e. at night and when I wake up. Tried magnesium in oil and tablet but it does not seem to help. I hope it will go for good one day but the neurologist was unconcerned.
A sharp neurologist added high quality curcumin to my supplements and that made a measurable difference for me. I have to forget to take stuff or have a really hard day before I start to really shake & spasm now.
You need to see a neurologist.
Your pins and needles could be caused by many different problems. Some of those could also cause your fasciculation (twitching).
And they will order the tests to get you on the right supplements for your systems in the place it is at the time, plus repeat it regularly to keep it there!
I've been on weekly injections for almost 3 years. My main symptom that led to diagnosis was muscle twitches all over my body, including my tongue, and pins and needles. It was terrifying. Although my injection schedule doesn't change, some days I have more twitches than others. They haven't gone away entirely, and they are small--no one else would notice them, but they have certainly become less frequent overall, and are now mostly limited to my legs. I suspect that what influences them is how well I manage my cofactors. I take oral B12, a B complex, vitamin D (also deficient in that) and magnesium glycinate, but there are many days I forget to take them. I did see a neurologist early on who determined that this was all B12 related, and not something else, and I found that very reassuring.
That is really reassuring, thank you. I wouldn't wish the symptoms on anyone but knowing someone else has them does calm me down!
Same story as mine!
I was scared to hell!My neurologist also said that this was all B12 related and said I have benign fasciculation syndrome due to b12 deficiency. My foot is constantly twiching. There are some days I don’t nozice twiching. He said that some symptoms may not go away at all. It depends how much your nerves are damaged.
Stay calm. It is important that you have strength in your muscles and that ou can function. Try not to bother about Your twiches. I am sure they will go away.
Stay strong 💪
I had random twitching all over before I started taking b12 that was the last of my various symptoms before I was diagnosed it was very scary. After awhile taking the injections, It stopped. Good luck.
Hi,
I was wondering do you still have muscle twiches from time to time or they have totally stopped?
Hey I have pa b12 deficiency
I have muscle twitching all over hope this helps xx
Hey 🙂
When were you diagnosed?and yes it help a lot ❤️
I’ve had pa for 4 years but the twitching only started last year for some reason but I lost my mum had a shock and it can be caused by anxiety stay away from google xxx
Sorry for your loss🙏
And thank you for your reply.i will stay away from google 😓🤣
Do it drives you mad and only really gives worse case
Wot of people get twitches for many many reasons
Mine are not painful are yours ? Xx
They are not painful but they make me anxious and than I start thinking that my nerves are dying. Its been 9 months now. I am not worried about random twiches. I am eorried about my foot which is twiching 70 % of the day. My EMNG was good and my neurologist said it may never stop twiching.
Then I’m sure it’s fine you know since I stopped worrying it has gone to much much less
Stress and anxiety is a massive part
My limbs even jolt Try having some magnesium spray that goes directly on the muscles rather than taking it via tablet form I found this help with my legs and I do get some pain in my legs so I won’t worry about it too much in fact not worrying about it is key if you’re neurologist says you’re fine and you had your EMG test and that was also fine then that would show any nerve damage it was occurring I’ve also had it I’ve got some brain damage that may have been caused by these were deficiency so I would look into getting some regular B12 even if You have to pay privately is more than worth it I get somebody GP every eight weeks and I get a top up one in between I know some people they inject every other day self injecting I think you can’t take any notice of bloods once you have been diagnosed with pernicious anaemia is important to keep your B12 up and look at it like looking after your nerves also lack of B12 can be a sign of a thyroid problem So can muscle twitching be a sign of thyroid problems have you had any other blood test if you have B 12 deficiency low ferritin on and vitamin di than you should haveYour thyroid Checked and maybe get them to run a possible blood testTo put your mind at rest but there is a lot of things that can cause the symptoms anxiety is also one of them have you got any other symptoms that you are concerned about xx
You have to excuse me if it doesn’t make sense are use the voice text and sometimes it doesn’t really write what I say comes out a bit muffled
When I was diagnosed vit B12 def I also had vit D def,folate def. My thyroid hormones are ok, MRI of brain and cervical spinal cord are OK, ultrasound of thyroid gland OK,EMNG showed small fiber neuropathy,feritin levels were ok,magnesium ,calcium,pottasium,zinc levels were also fine. anti Tg and anti TPO were negative, also negative for celiac disease. (I think they made me go through everything)”😓)
Now I am on monthly injections of B12, also I am taking sublingual vit D and 400 mg of magnesium every other day plus I am taking 7,5 mg of NADH.
Oh it’s good that you had a thorough checkup do you find that you feel better on your B12 do you know is that he drops down and that you may need it maybe need more how often do you have it I’ve had every test and the sun the only positive test result I’ve had is higher ice levels I had a few lesions on the brain which were not consistent with mobiles versus which is what my mum had I have been tested for lupus sarcoidosis I’ve had a number puncher and many blood tests
Also had a full body pet scan which showed inflammation in my Lymph nodes in my neck but still no diagnosis the only thing that has been positive is my B12 deficiency so I do believe it is very important to keep that topped up even above the NHS recommendations.
Also I forgot to say even if you’re THS levels are normal and even your T4 levels are normal is advisable to get the antibodies for your fibroid tested and your T3 which isn’t something that is regularly tested by your GP is something you have to asked for I think it’s called a full thyroid antibody test I’ve paid for mine of Medi checks I’m still waiting for it now I have a lot of symptoms of thyroid as I’m sure you do I see a rheumatologist in London he thinks I might have UCTD which you could look into see if it fits xx
Generally no, I don't have twitches anymore. Very seldom I will get a few. Its when I'm tired.
Oh it’s good that you had a thorough checkup do you find that you feel better on your B12 do you know is that he drops down and that you may need it maybe need more how often do you have it I’ve had every test and the sun the only positive test result I’ve had is higher ice levels I had a few lesions on the brain which were not consistent with mobiles versus which is what my mum had I have been tested for lupus sarcoidosis I’ve had a number puncher and many blood tests
Also had a full body pet scan which showed inflammation in my Lymph nodes in my neck but still no diagnosis the only thing that has been positive is my B12 deficiency so I do believe it is very important to keep that topped up even above the NHS recommendations. It’s very nerve wracking isn’t it to think they could build these different horrible things and then they come back with absolutely nothing you can leave your mind doing over time and can also then make a sentence worse due to anxiety and then when you hear the word anxiety thing really but I think we have to take one day at a time and if there really is something else it will show itself and the neurologist and Doctors do tend to know what they’re doing and the only thing you can do is trust them and try and move on with your life keep yourself a stressfree as possible keep your be to have topped up take your vitamins eight as well as possible exercise and hope for the best but I do believe they will find something if it was if it was there It’s very nerve wracking is the net to think they could be all these different horrible things and then they come back with absolutely nothing you can leave your mind doing over time and can also then make a sentence first due to anxiety and then when you hear the word anxiety think really but I think we have to take one day at a time and if they really are something else it will show itself and these knowledges and Doctors do tend to know what they’re doing and the only thing you can do is trust them and try and move on with your life people self a stressfree as possible keep a beta I’ve topped up take your vitamins is well as possible exercise and hope for the best but I do believe they will find something if it was there.
Xx
I agree with you. Thank you for your support and time. It means a lot. I hope everything turns out well for you. ❤️
Good luck I truly believe we will both be fine xxx
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