How to define PA?

[Cb1963]

I don't even know if I've got pa, I'm getting the B12 injections on a 3 monthly cycle, and had a course of folic acid tablets for 2 months, then was told I was no longer required to take them anymore, however recently had a lot more different symptoms my tongue is constantly tingling and have a constant ringing in both ears, so went back to the doctors and asked for a blood test and explained all my symptoms, even though I've got neuropathy in my arms and legs and have done for several years, our practice nurse doubles up as the secretary and I voiced my concerns to her when she was giving me my last injection, but she seemed to be not duly worried, so guess what it was her saying I'm slightly low on folic acid, hmm, so now back on the folic acid 5mg tablets, will these symptoms go away or is this another sly trick this condition causes, and is this permanent, it's a nightmare not knowing, and I just feel trying to solve all this different problems is like doing a rubeks cube with a blindfold on, any input in layman's terms would be gratefully appreciated, sorry for the long post, thanks.

[Nackapan]

My daughter gets a sore mouth and sometimes ulcers that clear up with folic acid. She takes 400mcg a day now. My mother isn't florescent but I get sizzling in my head and shrill horrid noises if try and speak on the phone . The shrill noises don't always happenice. Mum folate wenth above range taking folic acid in the same dosextent. So I guess the sore mouth will clearn up with folic acid. The tinnitus or sizzling or ringing mat Kessingland with b12 injections. Mine has lessened but not gone away. I notice if quiet! I get vibrations in my mouth when speaking at times . It comes on with noise sensitivity. You may need 2 monthly injections?? It is a roller coaster . For instance I had an injection on Wednesday. Today I started to stagger when trying g to walk round the block. If I was due an I jections I would've put it down to that as an old symptom of thought had gone. I hope you find the right regime for you. I personally have 3 monthly blood tests at present to check on iron folate vitamins as thy still haven't settled. I don't know if I've got PA either but have been told b12 injections for life. I assume other things have been ruled out? I also keep a diary as things are changing again.

[Cb1963 in reply to Nackapan]

Don't think my doctor is willing to increase my 3 monthly cycle, but trying to convince them that I want to go onto a 2 monthly cycle is near enough impossible, I know my own body at 55 years of age, and I can't understand why that they won't consider this, I wonder if any one else has this conflict of interests with getting injected a bit more frequently, thanks for your reply, here's hoping that I don't get any other more mysterious ailments with this dreaded condition, thanks.

[Nackapan in reply to Cb1963]

I had trouble getting the injections increased initially. Was told loading dose then 3 monthly. 6 weeks after loading dose I had so many symptoms that it took the neurologist to state on a letter to follow bnf guidelines. I had alot of advice on here. Ithe wasn't easy as one doctor refused. Another trad the guidelines and I was put back onot every other day until no further improvement. I have led the way since and am currently trying every 2 weeks. The thing to say is I'm sure you treat every individual person differently according to their symptoms. Go with a list of symptoms and ask for a 'trial ' of more frequent injections to see if they help. It's worth a try. Good luck. I know it shouldn't have to be like this. I don't know what I'm doing half the time as one regime does not fit all. I've still a long way to go. I'm trialing Hrt too. Gp thinks oestrogon will help brain. ?? Amitriptyline didnt help me but of course it does others. I'm resisting other antidepressants or gaberpentin unless anyone on here has had good results for their symptoms. I'm not functioning at an acceptabke level . Often bed or house bound. So I'm ploughing through options although few. B12 injections have given the most improvements.

[fbirder in reply to Cb1963]

Ask your doctor to look at the latest online version of the BNF. In January recommendations for hydroxocobalamin changed from ever 3 months to every 2 to 3 months.

[Nackapan in reply to fbirder]

Yes as the neurologist suggested to my G.p. Also as Clivalive said and I've got on my precription too are the words As required or similar so the frequency isn't set on it.

[Cb1963 in reply to fbirder]

Thanks for the pointer their, I'm not a argumentative person, and obviously the doctor may have the upper hand in any discussion, but I appreciate your input, thanks

[fbirder in reply to Cb1963]

The doc almost certainly doesn't know about the change. The BNF makes dozens of changes a month, so it's not easy to keep up with them all.