Can some one tell me please...

[pugdogs10]

I have been on injections now for 10 years initially 3 monthly and for the last 3 years 4 weekly and still have neurological symptoms ie numbness in feet, hands and face lips and tongue. I saw a haematologist a week ago and was told that injections every other day until no further symptoms is for newly diagnosed patients only. Can anyone tell me if this is true?

I have since started self injecting myself 3 times a month to supplement the 4 weekly one I have at my doctors.

[fbirder]

Have you been tested for diabetes? That can cause peripheral neuropathy like B12 deficiency.

If it is due to PA then I'm afraid some nerve damage just doesn't repair itself

[pugdogs10 in reply to fbirder]

No I haven t been tested for diabetes as far as I know although when I saw the haematologist he did do a lot of blood tests. I will go to Lloyds pharmacy where I think they do free blood sugar tests. Thanks for responding.

[lcunliffegizmo123]

Hi , i had this too, you definately need injections b12 every other day till no further improvement , take the BCSH guidelines into your gp , they should go by the symptoms and not the blood tests x

[lcunliffegizmo123]

yes it is true ,and also you can repair most of the damage done with every other day injections xx

[pugdogs10 in reply to lcunliffegizmo123]

Many thanks for your reply. I ll keep trying.

[Gambit62 Administrator]

Sometimes the damage done during deficiency doesn't reverse ... and as Fbirder says there could be other things going on.

See from another post that you are just starting to use methyl - which may make a difference - though again no guarantees.

3 months isn't something most people cope with and it is difficult to say from bloods what is actually going on at the cell level - so possible that you have been on 'starvation rations' that have just kept you going without actually giving your body enough to really do healing so its certainly worth trying a loading dose type regime for a while and see what that does.

[pugdogs10 in reply to Gambit62]

I have the ampoules and you are right it is worth a try... Many thanks for your reply.

[Polaris]

Appalling that they can be so rigid about more frequent injections when you are still suffering - good point Gambit makes about starvation rations but not enough to heal.

I'm glad you've decide to self inject - have you tried also supplementing Jarrows Methylcobalamin 5000mcg. SL ?  A lot of people seemed to find they help neurological symptoms.

An interesting extract from Wilhelmina Reitsema - Rapid Responses to the BMJ research document :

bmj.com/content/349/bmj.g52...

"Is it important which form is used in treatment? In most people, it does not matter. They can convert cyano- and hydroxo-cobalamin into the active forms needed. However, I have recently reported a case in which it did matter. The severe vitamin B12 deficiency, including dementia and psychosis, responded to treatment with high dose oral methylcobalamin, but not to equally high dose oral Hydroxocobalamin".

My relative was wrongly diagnosed with ME for years, then Altzheimer's, and not given sufficient injections at the outset. We so regret wasting time battling with surgery and wish we'd just got on with own injecting earlier, as she's now very ill with psychosis and wrongly sectioned,  The Jarrows had been helping a lot but it was all downhill when memory deteriorated so much that she constantly forgot to supplement the injections with tablets as well as forgetting to take thyroid medication.

I hope you start to feel better soon PD.

[pugdogs10 in reply to Polaris]

So sorry to hear about your aunt. It is as you say so completely unbelievable any one would think injections were expensive. I do actually use Jarrows 5000 and they have helped a lot especially with oral symptoms that is why I decided to try self injecting with methylcobalamin. Anyway fingers crossed.

Many thanks and best wishes.

[sweetnessandlight]

I think very few doctors will agree to the "every other day until no further improvement" regime especially when you have been on 3 monthly injections. Imagine the amount of clinic time that takes up, unless they will agree to prescribe for you to inject at home. In the guidelines the problem word is "initially" which doctors interpret as when you first start treatment. Patients like you and I get Neuro symptoms after inadequate treatment. I suspect mine are partly due to folate levels being extremely low for several months in addition to not enough b12 for over 5 years. I now SI every other day and take 5mg folic acid, but a lot of damage has been done. I am due to have nerve conduction tests and MRI so we will see.