B 12 injections

[gravener6]

Hi went to see private gp on Monday he spent time listening to me seemed to understand my 4 1/2 year journey and said b12 injections seemed a good idea to trail as it sounds as if I've had many years not absorbing vitamins so I had my first jab I was hoping to feel instantly better but disappointingly no immediate affect! But by the evening I started to feel a little different and I could see a bit more clearly so I decided to test my legs and at 10 o'clock last night I went out in my slippers in the rain and WALKED around a small square in front of my house! Which is more than I been able to do in years!! I couldn't sleep last night I was so excited! Unfortunately I don't feel great this morning but I'm hoping given time maybe!! Just want to share as I hope other's will persevere no matter what health professionals say! I'm not saying I'm cured and I know I may come down a bit and still have a lot to learn and a long way to go.

[Regalbirdy]

Hi,

By about my 3rd B12 loading injection, I seem to remember feeling much more alive and bouncy.

Give it a bit more time - everyone reacts slightly differently. 😉

[gravener6 in reply to Regalbirdy]

Hi

Oh I do hope so my walkings bad again this morning and I feel terrible but underneath I'm hopeful now, how often were you having your loading dose? Mine's every other day for 2 weeks I can't be live how it's helped my vision!

[Regalbirdy in reply to gravener6]

It's a while ago now. However what I had sounds very similar to what you are having.

Feel better!

[Regalbirdy in reply to Regalbirdy]

Oh and btw, by the last injection I felt like zebedee from the Magic Roundabout in comparison to how I felt before!

[gravener6 in reply to Regalbirdy]

Brilliant 😊 hope it's the same for me thankyou glad it's way back for you, hope your in good health now.

[cocoa]

Glad to hear that you are already feeling better.

Do you mind me asking how you found somebody to treat you privately ?

I would be willing to pay for treatment because, like you, I feel that I am not getting any help at the moment.

[gravener6 in reply to cocoa]

Hi

I had physio therapy and asked the therapist for advise and he toid me to ring a local private hospital which i did and they booked me the appointment with there gps it cost £95 for half an hour but he didn't rush me we were in there for about 45 mins and he understood my journey and was understanding and made quite a few surggestions. He perscribed the b12 injections and said it was defiantly worth a try. Then you have to pay for the script privately to which cost another £30 but if it helps its going to be worth every penny I wish I could afford to go there all the time! He also recommended tests but said let's try this first cos he said he didnt want us to have to spend more than was nessassary. I definitely recommended it but I think we were lucky cos I've paid years ago for a private consultation with a urologist £185 for 45 mins and after he did op on the nhs left a message with a nurse for me to take ibuprofen a year later discovered I had painful bladder condition interstitial cystitis where the lining of my bladder was gone! So some are not great!!

[gravener6 in reply to cocoa]

Hope that helps, it's really hard when you leave the GPS and just have to struggle on when gp just goes on to the next patient. Thankfully we've got alot of information we can keep reffering to on the internet and I think sometimes we're better guided by people on here than GPS definatley more knowledgeable and understanding with surggestions and seeing what others are going through makes us realise we are not alone.

[Lisahelen]

Lots of people actually feel worse for a time after their injections think its a case of the body going ' hang on, what the hell is going on here!'

If you have been deficient for a significant length of time it is probably going to take a while to feel back up on top again.

Was folate, ferritin, potassium etc included in your blood tests? These can be depleted when having high dose of b12 so taking a good multivit/minerals would probably be advisable.

Hop into the pernicious anemia site where you will find loads of info and informative people who can often help.

[gravener6 in reply to Lisahelen]

Ok will do thankyou 😊 hope your well today

[Lisahelen in reply to gravener6]

Today was one of my favourites! I get to have gluten free fish and chips😄😄😄😄😄

If the injections work you might consider self injecting at some point. Again the PA forum has info.

[gravener6 in reply to Lisahelen]

Brilliant 😊 did you make them or buy them? I'm still eating McCain straight oven chips as they say there gluten free?

[amimaryann]

Hi, It's so hard getting GPs to take you seriously about B12 but lack of it has devastating results on your body. It took me about 3 weeks initially to feel better, I now have the injections every 8 weeks, you have to learn how often your body needs them..

[gravener6 in reply to amimaryann]

Hi

Thanks for sharing that with me, I agree devastating! Go has been rude and very unhelpful I did my injection myself today which I guess you know is my second but by this evening I have again been able to walk a short distance more th a I have for 2 years! But it only lasts for a short period of time 😦 I hope and pray this works for me to! And am so grateful I've only been wheelchair bound for 2 years and not 20 and then be told about this. I'm so glad you sound as if it's been helpful for you to! Why are drs so blind to this and offer no support at all left to watch video's of how to inject myself seems my only way forward surely this is wrong don't GPS want to help? What if it was there children? X

[amimaryann]

Hi Gravener6. You will eventually get better, NICE guidelines are very low Great Britain around 500/600 I need to keep my my levels at at least 800 .We are not all the same, In America they class a level of 1000 the bottom and also other European countries have higher levels. Always ask for your levels after every blood test. Also make sure your Folate levels are correct, if your Folate is low your injections won't work. Google the Pernicious Anaemia site lots of valuable information on there. I read of an American Paedatrician who ended up in a wheelchair before he was diagnosed with B12 deficiency, he's now on the mend so hang on in there, and always ask questions.

[gravener6 in reply to amimaryann]

Hi Amimaryann

Thankyou I'm holding on! It's been only just at times I can tell you!! I can't understand why my gp thinks my b 12 level is ok at 345 if guidelines say 500/600 I to have been in a wheelchair for 2 years with 3! Neurologist diagnosed functional neurological syndrome!! I'm walking a little better today after my second jab yesterday and I feel a little stronger. I was also told its in my head by one and I questioned myself a little, kept trying to catch my legs out lol I feel like sueing the drs for not one professional saying let's just try this b12 it should never happen and I don't like to think how many other people maybe suffering the same. I've not been able to sleep very well since having them did you find that as well?

[cocoa]

Glad to hear that you are feeling the benefit of the B12 injections. I am following your journey with interest and have now given up hope with my GP.

My B12 level was 272 and still within range, so no help offered. I am looking into finding a private GP and in the meantime gathering all the relevant information.

[gravener6 in reply to cocoa]

Hi cocoa

Oh your level is lower than mine at 345! I would definatley recommended it! I've gone down hill a bit this afternoon guess it's getting low again, but the second injection stayed in me longer this time so I'm hoping third will carry me through the in between day at the momment my breathing is a bit laboured and I'm struggling to do anything! And when I do the jab it seems to take at least 9 hours to start seeing the benefit. I have also ordered some on line speaking to a very knowledgeable person at vitaminb12online hope that helps let me know if you do go ahead please. If I can feel a bit better I might go to the cinema on Saturday for the first time in 7 years even though it's just sitting there I haven't had the energy to go and be amongst people so it's giving my husband his life back to! I'm just a bit nervous I might be pinning everything on this and I don't want to crash.

[Mnut]

When you start B12 injections you are supposed to have 6 injections every other day for a fortnight to get them established. After that is is usually every 90 days. Go to your normal GP and explain.

[gravener6]

Hi

Mean 6 injections in one day? I'm having 1 every other day had 3 so far and I managed to walk a short distance in Sainsburys today first time for years without my wheelchair I was smiling so much by the time I got to the cashiers.

[gravener6]

Had my red injection yesterday and was feeling really ill all day and worried it wasn't working! 😐 but picked up a bit today and actually walked a bit in Sainsburys no wheelchair! Feel really weak though and legs are bad again now but it was the best feeling. 😀

[AnnaM2017]

Sorry what level was your b12? Mine was 420ng/l but I had been taking supplements. I have problems walking at the moment and can only walk very slowly and about 30metres. I haven't been offered injections but take 8.6micrograms a day. I also don't have reflexes in my legs and I thought it was because I'm hypothyroid.

Vit d was only 50nmol/l.

[gravener6]

Hi

My b12 level was 345 my walking was also very slow and I could only walk a very short distance and my legs became stiffer and it became difficult to put 1 foot infront of the other. I've read that even though your results can look within range your body may only be able to access 20% of what's in your blood! My walking is definatley better its freed my legs up and the short distances I been walking my husband remarked I was walking at a normal pace which I hadn't realised 😊 the trouble is with supplements is it has to be absorbed and there can be lots of reasons why your not absorbing. I would definatley suggestyou try the injections as far as I'm aware you have nothing to loose! I still unfortunatelyfeel pretty ill alot of the time so I don't think it's the full story for me but I'm at the stage of being prepared to try anything! !! Hope that helps.

[cocoa in reply to gravener6]

Just wondering whether the injections have helped you any further?

I went to see a private GP this week with all my recent blood results from my NHS GP. He has suggested starting on injections once a week to see if they will help.