Recovery Time?

[sarah113]

Hi everybody, I'm Sarah and i'm hoping somebody might be able to give me some advice.

I developed neurological symptoms (dizziness, vertigo, tingling in feet, eye twitching etc) almost a year ago. I went to a neurologist who diagnosed me with vertigo caused by migraine and put me on medication. After a few months I was able to function enough to go back to work but never felt 'normal' and couldn't shake the brain fog, palpitations etc. I also started feeling more and more tired until about 7 weeks ago when i was so tired i could barely get out of bed for a week and had terrible headaches.

I did some research and found out about B12 deficiency so asked my doctor for a blood test (having never been tested for B12) and my level came back at 85. All my other bloods including folate were fine.

I've been on once a week injections for 6 weeks and just had a repeat blood test which shows my B12 level is above 1400. I was shocked since i haven't felt much of an improvement yet.

My doctor says i should be feeling really good by now. I'm just wondering if anybody else has experienced this quick rise but not feeling better.

I know it takes 3-4 months for new red blood cells to form so should i expect that in another 4-8 weeks I will finally start to feel good?

I'm trying to be patient but i have to work for 8 hours a day on my feet and since i am so exhausted all the time, every day is a struggle and I just want my life back.

[henesyma]

Hi Sarah...I too had neuro symptoms when I first presented with Pernicious Anemia. I was told that nerve damage can take up to 2 years to correct as nerves grow back at the same rate as hair. You might want to try taking iron supplements in an effort to increase your energy levels and make sure you keep to a healthy balanced diet. It was a struggle so please be very patient while your body starts to recover. You may not get back to the way you were before you were diagnosed, but at least management with the B12 injections will halt the progress of PA. All the best

[Hidden]

Hi Sarah,

It seems to be very different per person when they do start feeling the benefit of the injections, can be days, weeks, months or even years. In time you will feel a lot better and start o rely on the injections to keep you well. I hope you will feel improvements soon,

Kind regards,

Marre

[Secondchance]

Hi sorry to hear that. I had neurological symptoms (felt mixed up, unable to think clearly, pins and needles, numbness, slight limb weakness, very unsteady on my feet, worse at night) that came on acutely after a very long period of other symptoms like some hair loss, palpitations, unexplained stomach and chest wall pains (back of chest) and extreme tiredness (sleeping through alarm all the time). I insisted GP give me alternate day injections as per BNF guidelines as he was going to give me a one-off to see how I went, then maybe a monthly, then maybe weekly. It was only when I showed him the BNF guidelines that I got proper treatment.

From your post it seems you may not have got that. If not, please insist on it.

I started to feel more awake after a couple of injections and pins and needles settled after about 3-4. My balance and walking took about 6-7 weeks to resolve. My thinking was clearer after a couple of weeks.

Hope this helps

[Gambit62 Administrator]

your levels were very low when you were diagnosed so not surprising that you have a lot of neuro symptoms. These can take a while to resolve ... and if the damage is too severe they may never resolve entirely.

Don't worry about the high result - doesn't really mean a lot now as your system is being flooded with a lot of hydroxocobalamin but that doesn't mean that your body has managed to transform that into the active form that is used at the cellular level. hydroxocobalamin is used at much higher doses than you are receiving to treat cyanide poisoning.

Try to find out as much as you can. B12D does affect different people in different ways but for some reason this, and the fact that B12 injections are a treatment rather than necessarily a cure don't seem to be well appreciated ... in fact they tend not to be appreciated at all.

You may find that you respond better to methylcobalamin as that is closer to the active form that is used at cellular level but it isn't available on the NHS

Take care of yourself and try to find out as much as you can ... and encourage your GP to do the same.

Would recommend joining the PAS and ordering their books - people also recommend 'Could it be B12?' ... and you could probably give a copy to your GP to read as well.

Aside from the PAS website you might also find the following useful

b12d.org/

cdc.gov/ncbddd/b12/index.html (american but is aimed at raising awareness of the condition amongst their medical practitioners.

[engels]

I don't understand the treatment you are getting. If you are in the UK, the standard treatment is a hydroxocobalamin injection every other day for the first 6 injections followed by an injection every 3 months for life. However, if you have neurological symptoms, which you obviously do, the treatment should be an injection every other day until there is no further improvement in your symptoms followed by an injection every 2 months for life. Refer your doctor to section 9.1.2 of the BNF (British National Formulary) and ask why you are not being treated correctly.

[sarah113]

Hi again,

Thankyou to everybody for your responses- it feels great to actually speak with people are/have gone through the same thing since it's hard for me to speak with my family and friends about it as they just don't understand. When i first started the injections i saw that on the pamphlet that came with them it said dosage should be every alternate day for 2 weeks followed by one every 3 months. I queried this with my doctor and she said that once a week would be fine. I saw another doctor for a second opinion and was told the same thing so in the end once a week was what i had.

I don't know about other countries but in Australia where i'm from, you don't need a script for hydroxocobalamin injections so it was really hard for me to not just get my nursing friends to give me the injection every second day instead of weekly.

I will definitely have a look at those guidelines and links and show my doctor when i see him in a few days. I guess i'm worried that he will want to slow injections down since my level was now so high rather than speed them up which is maybe what i need.

[Hidden]

Hi Sarah,

My serum B12 when diagnosed was same'ish as yours; serum B12 86 ng/L = 63 pmol/L. I also got the same loading dose scheme as in one every week for 6 weeks, then one a month for 3 months to then go onto maintenance of one every 3 months hydroxocobalamin. I over time got worse and had neurology appointment, MRI etc resulting in one every 2 months maintenance, but by that time also learnt to self inject and add far more frequent B12 (once ever 2 weeks). Anyway as you are in Aussie land you will have no problem getting extra hydroxo should you wish to. I am not sure but perhaps gentle loading is done with those who are very def in B12 and have macrocytosis etc, just to possibly avoid to much stress on the system (and hypokialemia) initially. My thinking. So think you are wise to first stick with your Drs treatment, particularly as you know you can take matters into your own hands should you wish to. Remember to make sure you eat well and that loads of B12 needs loads of folate and iron (plus other B vits/ mins) to metabolise, so a good diet and or vitamin supplement can be good.

Hope you are just going to feel better and better over time,

Kind regards,

Marre.