B12, Deficiency...&... PA. Help-!

[Nytsom]

Need some help and advise please!

After having the 6, loading injections, and following some advise from this group; re, vitamin supplements etc... I began to see a little improvement ..

But, the improvement was short lived. The last of the loading injections was on the 1st, of June. My next B12, Injection is not due till the 17th, of August.

I'm now in a spot of bother with this illness; I'm swelling in places; having tremendous difficulty walking; even a simple task like trying to put my socks on is getting beyond my capabilities! (Wife is helping put them on).

Symptoms : Both feet (soles) painful and sore if standing or walking; left ankle swollen, left calf , left knee; and both hip joints. I'm now having difficulty walking across our lounge! Surely these debilitating symptoms cannot be from B12 Deficiency alone?? I have no strength in my limbs; weak in the knees and hips; my mobility is getting worse each day, although, I am trying to move about as much as possible.

I've read many times; that some of you are self injecting with Vit-B12 Hydroxocabalamin - Some using a syringe and some using a diabetic type of injection. Can anyone guide me through the process of obtaining Hydroxocabalamin and the diabetic syringe? Also; where to buy such items in the UK.

Any help. advise and guidance would be appreciated.

[Gambit62 Administrator]

The swelling doesn't really sound to me like B12 but that may just be because I haven't come across it before.

Stiffness and joint pains are pretty common.

Not sure what the cause of your B12 problems is but if it is PA then that makes it statistically more likely that you may have other auto-immune problems, and your symptoms do sound a lot like there is some rheumatoid arthritis going on but I'm not a doctor or an expert.

Have you spoken to your doctor about things and if so what did they say?

[Nytsom in reply to Gambit62]

Hi Gambit,

I'm seeing a GP on Wednesday afternoon. I do have Arthritic problems; and it mentions auto immune system in the blood test results.

[Gambit62 Administrator in reply to Nytsom]

Oh dear - sorry to hear that.

The UK restrictions apply to anything that is injectible. This means that you can't get B12 in an injectible form from a UK source without a prescription. You can get needles etc from UK sources without prescriptions - medisave is, I believe a UK site.

You could also look at B12d.org - they can provide methyl B12 but ask for a donation to cover the costs.

B12 may be making the pain from the arthritis worse. I had a lot of problems with pain in feet related to a broken ankle that has got a lot better since I got my B12 levels right for me.

[shevie]

you cannot buy any of the injecting equipment or B12 stuff in UK. Only tablets and these are no good if you have an absorption problem. You are perfectly entitled to order in from abroad and some of us here use goldpharma in germany and get needles etc from medisave. If you want to inject methyl you can get it from b12d.org. they get it from abroad and then send it on to people who need it. It is a charity started up by one of the most knowledgeable doctors in the world, about B12. You would need to donate if you can afford it. Others here will have links they can give you for needles etc

good luck

[Nytsom in reply to shevie]

Thanks Shevie,

I signed up to the Goldpharma Web Site .. I need to look at the Medisave site. do you have a link?

b12d.org sounds like a good site; and don't mind making a donation!

I'm still a bit bewildered by it all; and not quite ready to take the plunge in to self medicating, but collating all the necessary requirements and where to source them is interesting. I do not wan't to go against the NHS GP guidelines for now, it's early stages for me with B12 deficiency; and I'm hoping that the information and help I'm getting from this group, I can put forward to the GP. Failing that? I'll need some more help on self medicating.

Thanks for the help and information; it's truly appreciated.

[shevie in reply to Nytsom]

This is a link just use that to get to needles etc.

medisave.co.uk

I hope it works!

[Jo55]

As Pat said, get your thyroid levels checked!

[boydsfoolishrose]

Use a syringe. I took b12 with the insulin needles and ended up almost dying because of b12 deficiency.

[shevie in reply to boydsfoolishrose]

How do you mean?

[Chancery]

Nytsom, is it possible you have a thyroid problem? That does sound like thyroid oedema you have there (the fluid retention), and the aches and pains would also go along with that. If you haven't had your thyroid tested, I would do so post haste. As an aside, B12 deficiency often goes hand-in-hand with thyroid problems, so it's not at all unlikely that you have both, and B12 won't fix your thyroid problems, so that really should be investigated. Best of luck.

[Nytsom]

Well, the visit to the GP was a complete and utter waste of time! This one (you never see the same GP) looked at my referral to Rheumatology and made his mind up there and then it was not Neurological. !! So, another blood test next week for B12 etc.. and more waiting. I'm convinced it is a neurological problem. I've suffered with arthritis most of my athletic life; I've run marathons, done triathlons and lots more; while coping with arthritic problems. I know what arthritis can do to your mobility. This illness is totally different; and far more debilitating. I'll stop taking any supplements until after the blood test next week.

Wouldn't it be wonderful if GP's actually did some research; and maybe listen to their patients sometimes.

I need a plan to submit to the Surgery. I'm going to need a printer; and print out a record of my research on PA and B12, Deficiency.

Thanks for your help everyone, it's most appreciated.