Thanks for advice, I now need some more!

[natcap2]

Thanks for previous advice on treating B12 and atrophic gastritis. I have had two weeks of loading doses for B12. My GP was not sure whether to go down the 3 week loading dose and injections every 2 months or not, even though I do have neurological symptoms. She asked me to check with my gastro. I did and she insisted that 2 weeks was standard, despite me saying I have neurological symptoms. I have found that my neurological symptoms stopped after 2 weeks (last week), but after this week back at work the tingling / numbness has started again. It seems to happen if I don't get a good amount of sleep. So I am not sure whether to push for a third week of loading doses or to wait and see if it improved. If, as some of you say, the symptoms get worse before they get better, it is a bit hard to tell whether I need more B12 now or not. Any advice here would be very gratefully received.

Also Wedgewood mentioned Symprove helped. I tried to get hold of some online a year or two back without any success. Where do you get it from?

Many thanks.

[wedgewood]

Symprove helped my gut problems.( IBS type symptoms ) You can get it direct from Symprove (water -based— just google ‘Symprove’ ) where you can read something about it ,or also Amazon sell it , and some Health food shops.It is expensive but it cured my gut problems . Afterwards I did take probiotic capsules called Bio-kult . Now I just use home -made raw organic Sauerkraut . No more gut problems .

As regards injections , I’ve had to resort to weekly self-injections, as my numb feet , in spite of diagnosis of P.A. , were diagnosed as “ideopathic” ! I’ve managed to rescue my feet from numbness now , but they just burn and feel as though I’m wearing shoes 2 sizes too small . That’s now permanent , but I can live with that , but still regret that my doctor was so ignorant .Best wishes .

[fbirder in reply to wedgewood]

My (very non-ignorant) neurologist also diagnosed my neuropathy as idiopathic, despite my PA diagnosis. He said that the timing was out (the PN started at diagnosis and got worse over the next several months) and that the nerve conduction results weren’t right for B12 (or diabetic) neuropathy.

He told me how the symptoms would progress over six months - and was 100% correct.

[natcap2 in reply to fbirder]

It seems then that it is incredibly difficult to determine whether the PN symptoms are related to the PA and B12 deficiency. Funny that people with PA seem to also have idiopathic PN. If it isn't related to PA B12 deficiency then it seems that self injecting B12 to resolve PN symptoms is not worth doing.

In my case my mild PN started around the time of my PA diagnosis, and before I started any treatment. It seems to come and go now. So I really am not sure what to do about this with regards increasing frequency of B12 injections. It seems it may not really help. Maybe I should see a neurologist (as well as gastro, rheumatologist for diagnosis of possible Sjogren's Syndrome, and ENT for sinus/throat issues etc!!!). I'm sure my GP will be really happy about this!

[fbirder in reply to natcap2]

Self-Injecting to stop the progression of PN, to to reverse it, is definitely worth doing - if a B12 deficiency is the cause of the PN.

That’s why I always recommend people go see a neurologist to get some proper tests done, rather than assuming it must be B12.

There are around 80 different causes of peripheral neuropathy. Some can be serious if not spotted soon enough.

[wedgewood in reply to natcap2]

Why not increase B12 injections ? There is no harm at all. I had to self-inject , and my feet and ankles are no longer numb, they just burn now . You would be taking no risks at all . Look, so little research has been done on PA . The docs are still ignorant about the condition .

[Polaris in reply to wedgewood]

I agree - PA/B12 def. is very common, so waiting months to see a neurologist could mean the neurological symptoms become permanent, which is why UKNEQAS recommend treating without delay.

[natcap2 in reply to Polaris]

Thanks all for further advice everyone, it is much appreciated. I am having my third round of B12 loading doses next week, and I hope that will help get rid of the remaining PN symptoms. Thankfully my GP understands that this might not be enough so will give me B12 injections on a when needed basis in between the two monthly ones. I feel very relieved that I have her on my side at last. I think it just takes a while for GPs to understand how to treat PA if it is relatively new to them. I'm in the process of being referred to a rheumatologist due to the suspicion of a third autoimmune problem that can cause neurological symptoms too, so I am hoping that will disentangle the causes and mean that all this gets sorted.

[VaishaliG in reply to fbirder]

What symptoms of yours progressed to the next 6 month's? Kindly reply

[natcap2 in reply to VaishaliG]

Sorry VaishaliG I'm not sure what you mean.