My symptoms seem to be getting worse

[outlander28]

I have had PA for years, it was discovered because I had a mini stroke at 34. Once discovered I was put on B12 injections. After some time my energy came back but, the pins and needles, electric shock headaches, aches and pains never left - learnt to live with them. However, recently my stomach hurts more, I am tired all the time, continuous minor headaches and other niggling things. My body feels as if they are all connected (possible not the case), I keep getting mouth ulcers and I am constantly cold. Does anyone else feel these symptoms or is it all in my head.

[wedgewood]

We do know that autoimmune conditions seldom come alone . The fact that one of your symptoms is feeling the cold , leads me to believe that you might have symptoms of another autoimmune condition , namely a thyroid condition . This is worth looking into . May be of course , you may just need B12 injections more regularly .

[Nackapan]

My daughter got mouth Ulcers with low folate .Also cannot regulate body temperature.

Perhaps you need to have full bloods done

Get ferritin, viv D , folate if you can but be aware may be done with B12

Thyroid first line tests .

NHS don't do all tests needed apparently

Of as suggested a higher frequency ov b12 needed??

[B12life]

how frequently are you injecting and what is your dose?

[outlander28 in reply to B12life]

Every 12 weeks

[B12life in reply to outlander28]

If you have PA, for real. you may need a much higher frequency for the rest of your life. I HAVE to do daily injections or my symptoms come back. I have tried spacing it out so many times. now, like a diabetic, i inject daily and closely watch my symptoms. even then I never feel 100% of what I should but probably 85-90 which is pretty amazing considering where I was: bed ridden from fatigue, severe back pain, sciatica, numbness in my extremeties and all the other stuff. now, none of that but it sure does come back.

My suggestion is up your frequency until you get all the symptoms to go away and I mean good and gone; left untreated the damage can become permanent because b12 is responsible for cell generation. your cells in your body regenerate every 120 days, thus if low on b12 cells die and don't regenerate leading to all the neurological issues. Strange how the medical world completely misses this. I have 2 docs in the family and still had to treat it on my own.

If docs won't give you what you need. Get the supplies and start doing it on your own. It's what I do because going through the medical system is just so much more problematic.

[Technoid in reply to B12life]

From this 10-year old site poll, at that time, very few were getting by on an injection every 3 months with most on higher frequencies.

healthunlocked.com/pasoc/po...

It seems to me anecdotally that many posters inject at least once a week or higher, sometimes much higher. Would be interesting to see a new poll Gambit62

[B12life in reply to outlander28]

Also, the tips Wedgwood and Nackapan gave sound spot on too!

[Hockey_player]

Keep fighting for good health. Get a new doctor if you have one that is not supporting you. I would start by trying every other day injections for several weeks to see if that can get rid of the pins and needles, aches and pains, and fatigue. Get your doctor to look into the stomach pain (could be for example celiac disease, an ulcer, eating food that your body does not tolerate). I would also ask the doctor and also a dentist to look into the mouth ulcers. As someone mentioned the cold could be a thyroid issue. It's possible you have a lot going on. For the symptoms that do not go away after having EOD injections for a reasonable time, keep searching for a cause. My impression from this forum is that very few of us can maintain our health with one injection per 12 weeks. I get symptoms back in 3 weeks so I use weekly injections. You should be every other day at the minimum until your tingles go away.