Deterioration

[Clags]

Although I am lucky enough to have monthly B12 injections through my GP and have done for a while now, I have very recently had a huge increase in the intensity and spread of my neuropathy.

After starting the loading doses and regular injections since 2012 it was mainly tingling in my feet and lower legs but this change means I now have pins and needles in my thighs, and tingling all over. I have pretty constant internal tremor all of which are worse in the evenings.

In addition the tinnitus I have had for 2-3 years is much more invasive and I have a constant low level headache.

I take prescribed iron tabs for anaemia and omeprazole as I have a hiatus hernia and gastritis.

I am so disappointed this is happening as all seemed to have levelled out. Has anyone any idea why things have changed dramatically? I know omeprazole can reduce gut absorption but this isn’t a new medication.

Many thanks

[clivealive Forum Support]

Hi Clags have you thought to ask your doctor to refer you to a neurolgist?

What frequency of B12 injections are you on at the moment?

I am not a medically trained person and I wish you well.

[Clags]

Hi clivealive,

Thanks for your kind words.

This is so new I haven’t yet had time to see the Dr. I will certainly do that if it persists.

I’m on 4 weekly jabs from the GP.

[Nackapan]

I'm sorry to hear you've got worse symptoms at present. I'm sure you've gone over everything .

Any extra stess. Overtired. A virus. ... I'm sure when you get to gp more bloods will be done to see if any defiencies to be addressed.

Hoping it is transient

[Cb1963]

Yep,you are fortunate to get the injections every month,my doctor refuses to give me the injections except every 3 months,I've ended up with ringing in my ears,the pins and needles are now into my hands, I've always had them in my feet but even that is getting worse, I was getting severe headaches but I ended up being given a migraine medication, but I still feel the root cause is B12 issues,I'm also on lifelong omeprazole like yourself, I've always had stomach issues since my mid twenties,the B12 symptoms are so easily managed but if you get a doctor who decides to stick within the guidelines then there is not alot you can do, unless you decide self administer the B12,i have mentioned my ringing noises and the other symptoms, the tremor, and even the deep chest rumbling, which was agreed after alot of persuading i managed to get a blood test, and given a course of folic acid,I think anyone who is on long term omeprazole or who has had numerous operations,as the general anesthetics affect the absorption should be taken in for a blood test regardless of how they feel,the symptoms are endless, and cause so many problems,it should be standard NHS practice,hope you get some more positive feedback, best wishes.

[Prettyjoey in reply to Cb1963]

Hi

I have B12 injections every 3 months but I know like so many of us, we could do with them more often. You mention self administration, how do we go about doing that? Please can you let me know?

[Cb1963 in reply to Prettyjoey]

I'm not sure, ive heard other members mention sites in Germany where you can bulk buy the medication online, I think there is a forum member called wedgewood who is pretty clued up,sorry its not the best shout up,hopefully someone else might jump into the conversation and point you in the right direction, good luck

[Statesideheather]

I don't know what all could be going on with you.

I can say that if I only had a monthly injection I would be suffering many symptoms. At a once monthly shot I was constantly swallowing capsules and using lozenges just trying to level up.

I worked my way up, watching symptoms closely, to about every other day injection. If I wait 4 days, I have VERY noticeable symptoms. If I was using omeprazole, no doubt I would be even worse!

Hopefully you can get more frequent jabs and hopefully that resolves things!

[Clags]

Thanks everyone- hopefully this is transient but I will refer back to my Dr for further investigation if not.

[Bluebears2]

Sorry to hear things aren’t improving. I would make sure you are taking all your co factors to support the synthesis of B12, also make sure you are including potassium rich foods in your diet.

You might want to consider self administration, you should be on more regular shots when presenting with neurological symptoms and continue on this frequency until the symptoms subside.

If you don’t fancy this option then you might want to supplement with transdermal B12 or sublingual B12 ( patches/spray) the absorption isn’t as good as a shot but does help some.

Good luck.

[Gambit62 Administrator]

Clags - suggest you keep a detailed diary of symptoms - it may be that monthly isn't enough - which could be confirmed by seeing that the symptoms are relieved by the B12 but then get worse as you go through the month

(are you in the US/Canada? and on cyanocobalamin?) the regime generally quoted on this site is that in the UK where we use hydroxocobalamin.

the omeprazole is irrelevant as your B12 is coming from injections not absorption in the gut.

Its possible that something else is going on - eg folate absorption problems or even hypothyroidism.

[fbirder]

You need to see a neurologist. As soon as possible. Don't wait for it to get worse.

There are scores of possible causes of peripheral neuropathy. Do not assume that yours is caused by B12. It's unlikely that it would suddenly flare up after seven years of stability.