Pins and needles help

[mallard16]

Friends, I have been diagnosed with Pernicious Anemia and am suffering the classical pins and needles sensation in my arms and legs. B12 jabs have significantly reduced the sensation but I still have some remaining. Is there any over the counter or “home grown” products which can help relief?

[wedgewood]

Members of this forum have to get the extra B12 ampoules that they need to keep B12 symptoms at bay from excellent German online pharmacies . In Germany b12 ampoules are an over the counter item , unlike here in U.K. .

You can inject by the Intra-muscular ,or by the sub-cutaneous method. The cost of an injection is less than a cup of coffee in a café.

Here is the information that you need for the B12 ampoules .

The following reliable German online pharmacies(all registered with the German health authorities) will deliver vitamin B12 depot( Hydrocobalamin) single use ampoules to the UK

versandapo.de ( in Leipzig) use Google Chrome for translation. This is usually the best value pharmacy. U.K. IS Vereinigtes Königreich

Courier cost €9.99

Versandapo has a points scheme . You obtain 200 plus points when you register for the first time. Thereafter you get 1 plus point for every €1.00 that you spend . 250 points represent €2.50. . You can find out how many points you have acquired by going into your account.

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apohealth.de ( in Munich) site available in English( union flag flag, bottom left on my device)

Courier cost€20.00 for 10 packets . Lower cost for fewer packets..

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apotheke-marienbrunn.de use Google Chrome for translation. also deliver to Australia, New Zealand and USA. Drop down country list is in German. And UK is called. “Vereinigtes Königreich Grossbritannien und Nordirl”

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juvalis.de use Google Chrome for translation

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First of all, register with the pharmacy

When filling out the address form, you will see that the country is already filled out with Deutschland/ Germany . You must first change that to your own country by using the drop-down list to— U.K., UNITED KINGDOM, Vereinigtes Königreich, Grossbritannien , etc — however it is expressed. Do this so that your postcode and the rest of your address is accepted. Otherwise you will be unable to order, and you will be tearing your hair out!

amazon.de ( German Amazon) also sell Pascoe and Hevert , but depending on the supplying pharmacy may or may not supply the UK. you can’t use the pharmaceutical reference numbers to order from Amazon.de. You must use the brand names.

B12 ampoules are only allowed to be sold by registered pharmacies in Germany, so Amazon is, so to speak , a go-between.

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The following brands are usually available.

PANPHARMA ( formerly Rotexmedica)

1mg x 1ml ampoules B12 Depot ( Hydroxocobalamin)

Packet of 10

Pharmaceutical reference number1619 9653

Most popular B12 depot ampoule. Good value , but often out of stock.

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PASCOE b12 depot- package of 10 -1.5mg x 1ml ampoules

Pharmaceutical reference number—0756 8672

Packets of 10 x 10— 1.5mg x 1mg ( 100 ampoules) pharmaceutical reference number— 0756 8695

The Pascoe are much cheaper per packet if you buy the offer of 10 packets. If you inject weekly or more frequently., you will be covered. Otherwise, some ampoules may become out of date.

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HEVERT B12 DEPOT 1mg x 2ml ampoules. 1 packet of 10 pharmaceutical reference number 0607 8368.

HEVERT B12 DEPOT 1mg x 2ml 10 packets ( 100 ampoules) pharmaceutical reference number

0607 8380

ENTER THE REFERENCE NUMBERS WITHOUT SPACES !

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Use the pharmaceutical reference numbers to order from the pharmacies, it’s easier, but not if buying from amazon.de ( use brand names)

The above brands also sell Cynocobalamin ampoules. They are called B12. — NOT B12 DEPOT which is Hydroxocobalamin . Always enlarge the picture of the packets., to make sure you are ordering the correct ampoule that you want .

[Sailinglady]

If you still have symptoms of tingling, you still have neuropathy and therefore should continue with alternate day injections until those symptoms stop improving further (uk guidance). Go back to your gp and tell them you still have symptoms and you need to continue alternate day injections. Some surgeries will now teach you to self inject. If that doesn't work, then consider the self injection route and buying your own ampoules.

[mallard16 in reply to Sailinglady]

Thanks for your feedback! Yes, I still have them. They have significantly improved over last couple of weeks given that I am having the jabs, but not gone entirely. I am seeing doctor on Tuesday so will inform him. What happens once I reach the point of no further improvement? Should I also be seeing a neurologist? Thanks!

[Sailinglady in reply to mallard16]

You can ask for referral to a Haematologist or neurologist (or both, I saw both). I was lucky, my Haematologist was very clued up and i remain on alternate day injections 2 years on (my symptoms return rapidly if i reduce frequency). My neurologist organised nerve conduction studies which showed no permanent damage, but is not clued up on b12 deficiency, and said "but that's ok to have tingling feet for the rest of your life". A few months later the tingling disappeared!It remains a lottery finding a healthcare professional who understands the deficiency and what the treatment involves.

[Narwhal10]

Hi mallard16,

Welcome here. PA/B12D is poorly understood by the medical profession. Not their fault. So, you need to educate yourself and we help where we can.

So, it is worth joining the Pernicious Anaemia Society which is an international organisation. They have accurate literature.

pernicious-anaemia-society.org

Please know there is a lot of weird unreliable websites out there. The best book I can recommend is Dr Joseph Chandy’s Vitamin B12 Deficiency in Practice. Yes, he worked in the U.K. but he talks about the human body’s systems. Plus, the reversing out syndrome (feeling worse after an injection).

Please get copies of your blood results and the time, date and by whom diagnosed you with Pernicious Anaemia.

I gather that you in the U.K. and under cardiology. The book will explain a bit. Doctors are not trained in nutrition and you have a choice as to try and book a telephone appointment with your GP. They will not have a clue as to why you are phoning. They will most probably go down the wrong route of re-testing your B12 and a report will be generated saying an error message of you have enough stored in your liver for 2 years.

Most of us on here do the wedgewood method, we know not to consent to having our B12 levels re-checked once treatment has commenced. We do not store B12 in our livers.

A couple of months ago, attending a face to face appointment, I overheard an employee tell another that their computer had crashed 4 times in 90 minutes.

Diolch yn fawr