I was on EOD for 30 days prescribed by neurologist given I have PA . Felt fantastic and was able to literally run into the surgery get jabbed and run out. Finished 3 weeks ago.
Then decided to self inject myself and 'top up' with a self injection from Germany. Felt rough straightway and told a GP who advised that this was more mental worrying than anything but despite being able to run at the gym feel more fatigued by the day. I took another top up today and feel rough rough. Like fatigue and body aches. I have been running lots so maybe that could be it. But here is the question....
Does the aching and pains mean I need to revert back to EOD injections or do I just need to wait the 8 week GP injections? I suppose what I am asking is, if you take injections and feel rough how do you know if it is 'reversing out' or if it just too much b12?
Also, is it best not to leave long gaps between injections? I never felt rough at at all when on the EOD frequency.
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Damacian
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The grown ups in here will guide you on this.. i am a newbie. The only thing i would suggest from my trawlings in here is that keeping to a reglular routine is something many/most do.
Also, many listen to their bodies...to get THEIR frequency... after Loading..
If you are ......"loaded up" ....and who know...? ....then maybe its twice a week for you? (lots of activity?) or weekly, bi-weekly etc. monthly...? Glad you are feeling better !
I think that you have been doing too much running too soon , by the sound of it . I would go back to EOD for. awhile , and then when you feel better , only very gradually , small steps at a time, get more active . Be cautious . I know that you must have felt euphoric when you felt so much better, and you overdid the running .
Once recovered , only very slowly space out the injections. You will find the ideal frequency you need to keep the symptoms at bay . Best wishes .
Thanks for advice. The advice I see on this forum is that you should have b12 injections every other day until symptoms stop improving, my neurologist said this as well. However… the question is : once you stop how do you know the symptoms are a need to return to frequent injectors OR that the stop at are in fact just reversing out and should be instead be ‘ignored’? The point is if you don’t ever try and ride out the reversal period then nobody would ever stop injecting themselves every other day. It’s like an alcoholic would never actually quit alcohol if they always reverted back to alcohol once they started getting withdrawal symptoms…
If I was still reversing, I would keep using B12 every other day and not stop until I was back to feeling 100% again. Then slowly try spacing the injections out more. I get tingly toes after 3 weeks so my maintenance dose is once per week.
It's not too much B12. But I wonder if the B12 you have could have some contamination? Maybe try another batch? Did you feel this way when the doctor had you on every other day injections? One way to tell if every other day injections are better is to try them. Your rough feelings also might be from something unrelated that you are getting sick with?
I'm curious as to why your every other day injections were stopped by your doctors after 30 days.
The link below suggests that EOD injections should continue for those with neuro symptoms for as long as symptoms continue to improve. There is no time limit set. EOD injections could continue for weeks even months.
My understanding is that if your symptoms were still improving after 30 days of EOD injections then you should still be on EOD injections.
Delayed or inadequate treatment increases the risk of developing permanent neurological damge. In severe cases, the spinal cord maybe affected.
Symptoms Diary
Some forum members keep a daily or weekly symptoms diary. Maybe pick up to ten symptoms to monitor and score severity each day/week. Could be useful evidence to show GP of improvement or deterioration in symptoms.
If old symptoms return before next injection due or new symptoms are appearing then that suggests to me that more B12 might be needed.
Many UK forum members treat themselves if NHS treatment is not enough for them.
Some get extra injections from private GPs or beauty clinics, some try high dose oral B12 (1000mcg or higher) but this doesn't work for everyone (didn't for me) and some as a last resort turn to self injection (SI). There is a pinned forum post that mentions SI.
I left a detailed reply with lots of useful info in this thread below eg various B12 articles, links for those struggling to get adequate treatment etc.
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The Railway Worker 
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