Just wondered if other PA sufferers still get electric shock sensations even though your having the injection? I went for years having these sensations and kept trying to explain them to the Doctor, their only response was it was anxiety, I couldn't get them to understand that I new it wasn't. I do suffer with the odd bout of anxiety and I could tell the difference, but they wouldn't listen. It was until a long time later that I was diagnosed with PA, I realised it was that. It seems ok for a while, then about a month or so before I'm due to next injection that it seems to rear it's ugly head, some bouts of it are worse than others (I have 3 monthly injections ) Do other people experience the same or is it just me!? . Also, what actually causes the electric shock sensations? I find if I stay still and more so, don't move my head when I'm having one of these phases it's ok, but as soon as I move my head it triggers it, but only when I'm in one of the electric shock phases if you know what I mean! Would be grateful for any info / links so I can learn more about what it actually is and why it still happens when I'm having treatment but only now when it gets close to re-injection time.
Thanks everyone x
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Tictak
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I get the electric shocks and it is normally a signal for me that I have overdone things. It's like an excess of electrical activity along with other problems like restless legs, tremors, nerve misfiring etc. Although I am injecting daily I find if I inject at breakfast time and then do to much in the day then the electric shocks are more likely during the night, they can either be whole body shocks or bi- lateral below the waist shocks. If I inject later in the day then I am less likely to experience them during the night. But the key for me is doing less, the more sedate my daily life the better I am . Last year I remember a time I overdid things during the day and after 4 or 5 hours the electrical activity ramped up and fingers started moving by themselves limbs jerked, tremor started and big electric shocks during the night even though I had injected 4 hours before I started my activity. I also used to get electric noises in my head during the night like having a mini MRI machine implanted in my brain. That particular symptom disapated after 2-3 months of injections and combined with Gabapentin from my neurologist. The Gabapentin helped with that and restless legs but not with anything else. So for me it is definitely the case that I need to do less and inject later in the day and that works better for the control of excess electric energy in the body.
Once per 3 months is not often enough for most of us that end up on this forum. I inject once per week because I get symptoms back in 3 weeks. I wonder if more frequent injections would make your shocks go away?
I am in Victoria, BC, Canada. Things are much better here! I can buy injectable B12 and needles over the counter with no prescription. My husband got training in how to inject it. I can get him to inject my B12 as often as I want to. It does seem a big problem in the UK to be able to get B12 injections as often as needed. Many people are ordering B12 from Germany so they can inject themselves. There are people on here who have given guidance on how to approach your doctor to advocate for yourself. The advantage of self-injecting is that it is so much easier than going to the doctor. Mine is about 25 minutes each way from my house. Lots of people on this forum need B12 a lot more often than once per 3 months. Some are even injecting every day or even several times per day. It sounds like you don't need that much but a bit more often to heal your nerves so that they stop shocking you would be good.
Hi, I have suffered with PA for 22 /23 years and all has been well with my B12 injections until recently. my Pharmacist changed the supply of the B12 to Neo-Cytamen, the first time I injected it I felt a bit off for a few daysand then all was well, again, the second injection 4 weeks later I felt groggy and put it down to a 'virus'. 2 weeks ago I again injected this change in 12 and within about 5-10 minutes I felt that evey nerve in my body - head, torso, arms, hands, legs etc were jangling. It lasted about 3 seconds and it took about a week to fully recover. My balance, memory speach were all temporarily affected. My doctor has now prescribed the previous Hydroxocobalamin supply again, and put a note on my records for me not to be given Neo-Cytamen, so I will find out in less than 3 weeks if it was the 'medicine' or something else.....
Regardless why the product is causing issues, please put in a Yellow Card report so that the MHRA and manufacturer cannot be ignorant and claim they didn't know.
Yes, I'm in the UK. I had exactly your problem. I was getting 8-weekly injections but it was never enough. After a few weeks symptoms would return. Neuropathy, memory problems, falling or staggering, just to name a few. Then, with COVID as an excuse, they stopped my injections entirely. Within 6 months I barely even knew my own name. Just in time I discovered this site, read what others were doing, and started buying my own supplies from Germany. Once a month at first, now twice a week until no further improvement is found.
Despite many arguments with nurses and GPs they didn't listen. Five years later and they haven't changed. They know that I self-inject but avoid even the mention of it. I'm not far off of normal now, but no thanks to them.
Go your own way and take charge of your health, you soon get used to injecting. I use the Vastus Lateralis in my thigh as there is better access with less chance of hitting blood vessels or nerves. If you need injecting advice many here can tell you, or ask me for information, better still there are articles on-line about it.
I only get the electric shock sensations in my wrists. It feels like I have a rubber band around my wrist and then somebody twangs it. So, really minor, compared to other people.
I get these also, in my feet. Mostly in the fleshy areas around my toes or in my ankles. It's definitely not in the joints or gout. It feels like an electric shock or a scorpion sting. I do weekly injections and it seems like they are more frequent on the days right before my injection is due. Like many people on this forum, I have given up on the health care system and self inject and self source. (I'm in the US and it's impossible to get what I need here). After years of frustration I decided it isn't worth fighting the battle, my health and ability to function is paramount. So I have stopped asking and take care of it myself.
OMG, I have had then since I was a young child (nearly 70 now). No-one took any notice, they have got worse over they years. I also get cold sores, which feel the same when I am getting an attack of (what I call) snapses attacks. I find them very painful at times and I am going through a bout now. Like you I get when my injection is due, which I also have every 12 weeks. I have tried to explain these to all types of medical staff but, they do no seem to understand. I now get these attacks all over my body but, when I get them in my head is the most painful.
Same here, it's very frustrating. I'm trying to find out if it causing more damage to the myelin sheath when these bouts start up each time. Mine is through out my body and I hate it. UK Doctors seem to think one size fits all with treatment, but it doesn't, in a way it's like telling all diabetics you can only have a certain dose of insulin, when in fact we are all different and may need different amounts at different times / intervals (as diabetics do)
I suffered from electrical storms for a number of years after an extreme trauma event. I was taking 3cc cobalamin a week but was still experiencing them. One of 2 things changed that-1) increased to 4 cc per week 2) diagnosed and treated with multiple types of migraines by my neurologist, who knew there were so many different types! I would request referral to neurology as electrical storms are neurologist area of practice and you might be having migraines. I have not experienced one since. Now to be clear my electrical storms started at top of head and moved down through body about 10 seconds long.
I experience electric shocks/sensations in my feet when my B12 levels are not optimum. It is the very first symptom that appears when I slip out of full remission. It can take months of increased injections for the sensations to subside after relapse. They were stronger prior to B12 injections. Hope this helps!
Sorry to hear you are battling with the electric shocks. They are nasty, I had one in particular behind my left knee which would make my leg kick out it was so bad. Everyone looked at me like I was crazy.
They have completely stopped now with my injections (3 x per week) so I wonder if you are going too long without and if there is anyway you can get on your own self- injecting program ? 🤞🏼
'Electric shock' type symptoms are a sign of neurological involvement from the PA - and if there are neurological symptoms, you should be receiving 2-monthly injections, according to NHS/NICE guidelines -
Even then, this is not nearly enough. I've been on 3-monthly injections for over 22 years, despite multiple neurological symptoms at the time of diagnosis, and things have caught up with me - so many symptoms now that I'm self-injecting every other day. Push your GP for more frequent treatment, and in the meantime, order yourself some B12 vials and start self-injecting before things get any worse! The best of luck to you! 🙂👍
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