Wits end

[ellelou21]

Since last September when my husband had his loading shots and has been having injections every 3 months , he has got worse, his walking feeling in hands and other symptoms, he has lost his job now through this and today we are having to pay privately to see a neurologist. Will he ever get better and be able to work again ? I’m st my wits end !

[Nackapan]

I'm so sorry to hear this. Glad you seeing a neurologist. He /she will get more injections for him and hopefully check out everything. I hope the appointment goes well. I'm sure alot of others on here will ask for more info. And help you.

[Nackapan in reply to Nackapan]

P.s. I know everyone different and may have other medical problems. But if it helps i had loading doses in November after a month of not knowing what was wrong. Stopped for 6 weeks waiting for next injrction and was getting worse. Also paid to see a neurologist. He wrote to gp referring to bnf guidelines to re start injections. I had/have neurological symptoms. I basically should've carried on with every other day Injections until no further improvement. I had to go to gp for them to read letter from neurologist when nurse said 'screen' said no to injection. I'm still on every other day Injections at present. Into 4th week . Improvements have been made. I had help from this forum saying I'd missed out a stage . Hope your husbands appointment soon or go back to gp. Loads of links on old posts to help you as guidelines recently changed.

[fbirder]

What does the neurologist say (or has he not been seen yet)?

The first thing to do is to get your husband on the correct dosing regimen. He should be having injections every 2 months at least. If you're in the UK print this out - onlinelibrary.wiley.com/doi... - highlight this bit -

Those with initial neurological deficit should

receive hydroxocobalamin 1000 lg i.m. every 2 months. No

further testing for cobalamin levels is required.

and send it to your doc with an accompanying letter saying you are worried about permanent nerve damage and that you want an appointment with a neurologist ASAP.

[Eowyn1]

Hi - I know everyone has very different needs as to the frequency of the B12 injections. I have been in recovery for 13th months, and have found many ups and downs. Everything I have read in the book "What you Need to Know About Pernicious Anaemia & Vitamin B12 Deficiency", and on this site has helped me understand that one really needs to assess ones individual situation, and that for treatment "one size does not fit all". I began with injections once a week and am currently following the "every other day 1000 mcg injections". At this point in time my body needs the 3 a week for a bit , but I have a friend who sails along very well on injections once a month. Also there are different types of B12. I have found through trial and error that I respond best to the Methyl cobalamin (sp?). I am wondering what a "walking feeling in hands" is?

Anyway hope some of this helps.

[akanari]

Hi ellelou, after I was diagnosed and 3 weeks after my last injection, all my symptoms came back and I could not function. My doctor was very slow replying to my messages and like you and your husband I was at my wits end. I was considering self injecting but decided to try a supplement first (with some kind advice from this site.) I had tried a store brand supplement when I was first diagnosed which did nothing at all. This time I found a supplement online that had very good reviews and it worked!!!! I use Jarrow methyl B12 1000mcg combined with 400 mcg methyl folate. I take one every day and dissolve it under my tongue. It can take a while to dissolve but I think this step is essential because with PA I cannot process the B12 in my gut. I have not needed to have injections since, and my symptoms have not returned. Every one is different but this can be a painless and low cost way to be treated if it works for you and you do not need to fight with your doctor to get it.