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[Hercules1969]

So today I tell my doctor that I am getting severe anxiety and tremors throughout my body. She tells me that they treat many people with B12 deficiency and that neurological issues are rare and prescribes me two weeks of sleeping tablets. I despair sometimes...

[spacey1]

Either we're all far too quiet about our neuro issues, or the GPs are not hearing us! Neurological issues seem to be really common, and anxiety is a well known symptom which a lot of people report with B12 deficiency!

[Hercules1969 in reply to spacey1]

They have me on the standard regime of 6 jabs then a review. We shall see after that I guess.

[sianklawrence in reply to spacey1]

Apparently there is a huge link between depression/anxiety and B12, I've read a few things about it online, but overall I'm not sure! I guess it links back to the neurological side of things.

It's definitely interesting to hear other people experiences.

[Beanieskeeper]

Hi, GP’s really have no clue about PA, they blindly follow protocol. That’s why a lot of people self inject! There are a lot of very knowledgeable people on here who can hopefully help you, just wanted to say your not alone!

[Hercules1969 in reply to Beanieskeeper]

Thank you Bean!

[clivealive Forum Support]

Hi Hercules1969 are you still having loading doses of B12 and are you supplementing with folic acid?

It is important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

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.

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

I wish you well

.

[Hercules1969 in reply to clivealive]

Whenever I ask what they have actually tested they give me "the look". They have me down as a hypochondriac I think.

[Beanieskeeper in reply to clivealive]

I can definitely agree with clivealive, I have been SI for the last month under the guidance of the B12d charity and I keep getting weird little pins and needles in my nerve damaged foot! It isn’t incredibly rare to get neurological issues, it is actually scarily common!

[Plucky1976]

Honestly! It is so frustrating and infuriating for me to keep hearing about physicians saying a specific symptom isn't b12 related or that it's rare. Grrrr!!! Hercules1969, I hear ya about the anxiety! Anxiety is the only symptom for me that wouldn't seem to go away. It was bad! It was everyday, all day and night. I wasn't sleeping. I started seeing breaks here and there but not enough to be able to function normally so I did end up on a low dose of Cipralex for anxiety. My doc wanted to up the dose 4 weeks into it and I'm glad I waited a few more weeks. This is the first time ever that the lowest possible dose is working for me. Hoping down the road I won't need it at all. Do what you have to do to get your life back! As much I hate taking meds, I'm glad I did. I'm still having injections 3 times a week. The funny thing is, I tried cutting back on injections and I could feel the anxiety start to creep back. (Along with a few other symptoms) Maybe it's the b12 that is doing more for the anxiety than the Cipralex.

All I know is that you are better off searching for advice from this group than a physician. Good luck

[Hercules1969 in reply to Plucky1976]

Well I have had 1 night on Zopiclone and I at least slept well. Still shaky today. I am honestly scared I have Parkinson's after all this.

[Plucky1976 in reply to Hercules1969]

I was put on zopiclone as well as I was only getting a couple of hours a sleep for a couple of months. I felt like I was going crazy. I also had a feeling of shakiness. I truly considered Parkinson's as well as I was having severe muscle twitching and random limb movements. It was awful! I took the zopiclone for a few weeks which worked great but when I stopped taking it my anxiety got worse. Diazepam worked better than the zopiclone I found. Zopiclone has some terrible side effects when you wean off if you take it everyday. Try melatonin. I bought the spray and it works great. I only started sleeping well again on my own maybe 2 weeks ago. Consider self injecting with b12.

[Hercules1969 in reply to Plucky1976]

I have heard you can get patches. Might try that. I'm not good with needles.

[margareta12321]

I have lost faith in GPs as I was left in tears after giving mine several medical documents outlining the correct treatment when neurological symptoms are present.This along with advice from a specialist who my surgeon son knows saying that in his opinion my treatment was not appropriate infuriated her to the point of her shouting at me and telling me my neurological symptoms were not related to my B12 being 72.After my six loading doses my treatment went to 3 monthly.After about 5/6 weeks my symptoms would return.I had severe fatigue,tinitus,insomnia,Paraesthesia,paranoia,hair loss ,brain fog,confusion and honesty thought. I was going mad.I self inject now .I started daily for 6 weeks then every second day for 3 months and now its every 2 weeks.My symptoms have all gone .The only problem I have is that on one leg I seem to have lots of small veins and I bleed a lot when I inject there so I use the other leg and a nurse in the family does it in my arm.I hope. I never have to return to a GP relating to this.

[Hercules1969 in reply to margareta12321]

Well I have had 1 night on Zopiclone and I at least slept well. Still shaky today. I am honestly scared I have Parkinson's after all this.