I have had pernicious anemia too long about 16 years,have B12 injections 3 monthly sometimes earlier if needed. I cope overall well,but get fatigued a few weeks prior to injection. I also have been diagnosed with chronic pain and peripheral neuropathy (which i wonder has my deficiency affected by it?).
Anyone help with my wonder?
Sounds to me like you still have symptoms of deficiency. Ideally you should be having your next injection just BEFORE your symptoms return, not after. Keeping a symptom diary is a good way of working out when this is. Since you have now developed neuro symptoms (pain and neuropathy) you may actually need the loading dose again, and keep up the frequent injections until no further improvement. This is allowed for in the BNF with neuro symptoms, see here under "Dose":
evidence.nhs.uk/formulary/b...
Really, your doctor shouldn't be diagnosing pain and neuropathy as separate medical conditions, without first seeing if they are relieved by more frequent injections.
You need to also monitor folate and iron/ferritin, if these are low you won't be able to make best use of your injections. And getting a vit D test is also a good idea, as well as thyroid.
You can get loads of info and advice from the main PAS website and forum. Are you a PAS member?
Hampster
I get pain relief from having B12 injection but when it runs out it returns.
Thanks for all the advice, it does make sense and yer could be linked in. My folate and B12 levels are always in normal range, which would suggest that everything is ok? The neurologist i see month or so ago gave me results off me bloods and the vitamin D came back slightly low but wasnt bothered by it.I cant say that i have noticed pain relif when i have the injections. I defiantly got herniated discs that relate to the nerve pain down the left side, i have seen the scans and results myself. its puzzling, i will have a read up on the website you gave me and challenge the pain consultant when see him next.
It never does us any good to accept the "you're in normal range" prognosis. If I were you I'd get copies of all your test results and post them here or on the PAS forum. You'd be surprised how many doctors tell you you're "normal" when you're right at the bottom of the range.
You have had PA a long time, your neurologist should be making very sure that your current pain and neuro symptoms are not due to subacute combined degeneration of the spinal cord secondary to pernicious anaemia. I will attach an article in explanation, please bring it up with the neuro next time you see him:
neurology.about.com/od/Auto...
You can access the PAS website by clicking on the box top right of this forum. You really need to try and get more frequent injections.
Hampster
Thank you so much for the reply and great advice.I will ask Gp for results, i suppose they arnt the specialist in this area are they. The neurologist has discharged me, so i have written a letter to ask to see him again as this is obviously a subject that needs bringing up.
How much folate for how long?
How long until muscle twitches resolve?
How long is a while?
How long before diagnosis...?
Long Update
