Getting better ☺......

[Frances55]

Hi everyone... Just need a little advice I'm a wee bit confused 😕.... I started every other day injections 6wks ago just after I was diagnosed with PA with neurological involvement.. ( inherent)... And I'm glad to say that the last 5 days I've had no neurological symptoms smile ☺.... Instead my Pins and Needles and twitching has got considerably worse... So much so it's keeping me awake and making me feel unwell...could it be I should reduce my injections now to monthly because the neurological symptoms have stopped??... Or is the B12 still working... Any advice would be helpful ☺... All the best ☺

[clivealive Forum Support]

Hi Frances55

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with. I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

I'm not a medically trained person but have had P.A. (a form of B12 deficiency) for more than 45 years.

[Frances55 in reply to clivealive]

Thanks for your reply ☺... It's only the Pins and Needles and twitching I have at the moment... And don't get me wrong I'm overjoyed and relieved 😌 to be feeling so much better.. I had all my bloods done before I was diagnosed and started the injections..and seemed 👌.. Borderline mind you... And my doctor said the lab won't do them again so soon... Just got my potassium results back at the weekend and they're fine... I started taking zinc and vit c for the acne the B12 has caused... So not much I can do except put up with it and see if it'll start to ease... Maybe it's prominent because all the other symptoms have elevated... Before I was diagnosed and didn't have neurological symptoms.. These where the symptoms that took me to the doctor in the first place... And are now the only ones left... Curious indeed... All the best ☺... And thanks again ☺

[clivealive Forum Support in reply to Frances55]

I wish you well

[fbirder]

As clivealive says, it can take a while for some symptoms to go away (sometimes they don't if damage has been too bad for too long).

First off - get an appointment to see a neurologist. There are 81 possible causes of peripheral neuropathy in my book. PA is just one. A neurologist will do various tests to try and determine what might be causing yours.

To treat the pain I recommend getting a prescription for gabapentin or pregabalin. That does a good job of quelling my tingling so that I can sleep most nights. When it's too bad and I get the stabbing and twitching I take cocodamol- which totally knocks me out.

[Frances55 in reply to fbirder]

Thanks for your reply... It means a lot to me ☺.... My pins and needles and twitching have only got worse since my injections... So I'm hoping it's trying to sort it out... I don't have any pain with it.. But if I did I will keep your advice in mind... I hope your recovery is short... And your future pain free ☺.. All the best ☺....