Update. Difficult but success with more treatment

[Nackapan]

Went to the surgery for bloods and b12 injection. The nurse wouldn't give it!! Said on my notes to try tablets and 3 monthly b12 injrctions. It has been 6 weeks since loading doses finished. I quoted as advised the guidelines that I've actually missed a stage in treatment every other day until no more improvements. The nurse spoke to a doctor who I've never seen and still it was no.

My husband appeared and asked to speak to the practice manager as he was in my last consult. Whilst waiting I heard my name being called but only saw a doctor so I went into consulting room. (I saw this doctor at beginning with vertigo.I and she ordered the B12 blood test) we then realised that it was the practice manager calling from another room. So by default I got a consultation with a doctor!!. She didn't turf me out! I explained everything. She listened. She read the guidelines and the letter from neurologist. I got the injection and on B12 injections every other day now until no further improvement. Then every 2 months.

So I assume I carry on until I'm able to function then stop and have them every 2 months.

I'm pretty exhausted now with head buzzing and very pale and a bit wobbly and weak.

I think some of that is getting upset and wound up and the cab trip. So I'm really hoping I dont this time get so much worse before better. I really need to function more and get rid of more symptoms.

So thank you to all good advice on here.

Still a bit dubious of when to say to stop but I guess it will feel right. The doctor I know thinks it not all B12 symptoms and wants me to start amytriptyline that I was prescribed weeks ago. She saw me today at my most anxious trying to sort it all out. Actually the anxiety has almost gone 4 weeks post loading doses. Just waves occassion ally when I don't think it's going to end. I think they will stay on the shelf for now as I can sleep and only anxious today for good reason as still ill.

So I expect you just know when to stop the alternate day Injections? Any words of wisdom appreciated.

[Annnon58]

Fantastic , well done , amazing achievement . I wouldn’t worry about deciding when to stop alternative day injections , could take a year or more as your so poorly . Unfortunately your GP will probably stop them in approx 6 weeks as my husband s GP did , but it gives you time to order your own supplies and learn how to SI . Watch the nurse how she injects you and if pos get your husband to watch so he can learn how to inject you if he’s willing . So pleased for you , I’m sure your recovery will start now . All the best ( and avoid amitrpyline as b12 and folate will help reduce anxiety etc . )

[Nackapan in reply to Annnon58]

Yes the B12 definitely helps ease anxiety. I didn't suffer before I deficient.

Thank for reply. Happy Healthy New Yesr xx

[clivealive Forum Support]

Hi Nackapan was anything said or done about your Folate level?

I am so pleased that you are getting the treatment you need.

Don't worry too much if at first you may feel a little worse - it just shows that the B12 you are having injected is working.

I am not medically trained and wish you well.

[Nackapan in reply to clivealive]

My bloods were taken for folate level ad well today. I'm taking folic acid 400ug vit D vit c and eye health Lutein and zeaxanthin. Okay I will bear with it if I get a bit worse. Just hope not as bad as last time!

Thank you

Happy Healthy New Year to you

[clivealive Forum Support in reply to Nackapan]

Thank you for your kind wishes Nackapan hopefully 2019 will see a great improvement in your health and well-being.

[pitney]

Well done, hope you improve quickly but it may take quite some time, please try not to get stressed out as I find I feel worse if I am stressed and then end up back in bed. I hope 2019 is a much better year for you.

All best wishes

[Nackapan in reply to pitney]

Thank you . Happy new year to you

[pollianna]

As the others have said well done. I was offered amatrypt and Gabbapentin. GP nearly threw me out when I refused. The nerve pain I experienced has all gone.

These pills should be a last resort

[waveylines]

Great news!! Well done. Wishing you increasing better health in 2019 as those jabs slowly but surely do their job.

I took the self injecting route but chose subcutaneous -they have made an amazing difference -& am still improving bit by bit four months on. I also have finally got my GP to agree to alternate day jabs self injecting for the fore seeable future. So just keep going- hopefully they will leave you be for as long as you want. The two month rules is a nonsense and is not based on clinical research.....its just an arbitory cost saving exercise!!

I also take daily folate in a low b complex.

[Nackapan in reply to waveylines]

Hope you still improving on your regime

[waveylines]

Thanks Nackapan.....I am slowly but surely. 😊