Not sure where to turn to next and what to do.

[toady93]

A little low down was told in june I've pa since then I've pretty much been on b12 every other day till 3 weeks ago after 2 weeks all my symptoms are back. Waking with arm like I've slept on them. Pins and needles, weakness in my legs and arms, cant stand/walk to long sleeping way more than I want, can't open cartons of milk no strength in my hands. So I went back to my Dr's who gave me more B12 (5 shots) I took them last week last one was Friday. I was feeling things were getting a little better but now I'm back to getting my symptoms again. The Dr wasn't to keen on me having B12 on a weekly basis. I've now booked to speak to another dr in the surgery. I'm due to go for a weekend away on Friday I do hope that I will be ok to go. My Dr says that he can't test for B12 as the result will be in the thousands. Yet I ready others getting them. I did ask was I his only pa he's treated (I'm not more than ten less than 50) is it to much to ask to be able to feel better than I am? ?

Anyone know what I need to do to get this other Dr to do something eg Retest bloods, specialist for neuro symptoms more B12.

Being a shy non assertive person I'm looking advice to put to this Dr and be prepared when he calls.

That's in advance for your help I've hit a personal wall as to what I can do.

[Poppet11]

Okay, I'm going to say the same thing - but here we are going to hit the problems with guidelines on treatment.

Give your doctor this article to read (he will find the remainder in the BMJ, this is only the abstract) and ask him if your symptoms are as a result of permanent neuro damage when you were undiagnosed.

bmj.com/content/349/bmj.g5226

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The advice is that if you are not doing well on your current treatment then your GP should refer you to a haematologist, this then could result in a referral to neurologist. If all that fails to help you in any way best bet is to learn to self inject and look after your self, its what works for many. Marre.

[wedgewood]

Dear today93. Sorry you are feeling so bad. I second that reply that said learn to self-inject(I had to) Your GP has been so much better than mine in giving you quite a lot of injections. Also you could have the superior B12 blood-test at Guys' hospital . I am going to see an Ecological doctor tomorrow, and hoping for good advice about Methylcobamalin , as I have. numb and burning feet, which have not been helped at all by Hydroxocobamalin injections.( Martyn Hooper went down this path I believe) Imdo wish you all the very best.ASt least you know that you have allies here at PAS!

[Poppet11]

If you can get an expert to confirm neuro damage then you will be able to get your illness acknowledged. And this is what many need. It's not just the treatment (although that is paramount) People are being expected to work when they are seriously ill and damaged. If you look at this link

healthunlocked.com/pasoc/po...

It gives an idea of how the illness progresses.

No one knows when the neuro symptoms actually manifest, or rather at which stage, but the bottom line is your doctor is only treating your for the anaemia. Which is at the end. And that symptom is reversed very easily. You are then left with the mess of the neuro damage - and possible continual deterioration.

I know it's hard to get your head round, but I still have problems with milk cartons despite medicating myself for nearly 5 years.

You need to understand what is happening (and I know it is difficult when your feeling so bad) but this will enable you to spot when your doctor is getting it wrong.

You may well be left with self medicating for the most part, but you have to get this neuro damage acknowledged because if you are left without the proper care, the damage will compound over time. It's like trying to walk on a broken leg that has never been set properly, (if you'll forgive the rather basic analogy)