Please can I have some advice

[Kellylpt]

Hi everyone I was diagnosed with P A 2 weeks ago. the last 5 years have been absolutely debilitating. I have had diagnosis of fybromyalgia and heart arrithmia which resulted in needing a defibrillator as my heart rate was so high. The headaches and dizziness and balance problems are the most troublesome, I have recently finished a course of b12 injections and the balance and dizziness has become unbearable. Has anyone else experienced this? I'm panicking this is permanent as I have read P A can cause nerve damage ? Any advice would be greatly appreciated. Kelly.

[clivealive Forum Support]

Hi Kellylpt if you are still suffering neurological symptoms after your "loading doses" of Vitamin B12 you need to go back to your doctor and ask for the injections to continue until there is no further improvement.

You will also need to ask your doctor to check your Folate level as this is essential to process the B12.

Quote to your doctor the highlighted paragraphs below:

Treatment of cobalamin deficiency

Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment.

I wish you well.

[taka Administrator]

Hi Kellylpt Sorry to hear you are having such a hard time with your health.

What treatment did you get for PA? I'm guessing that you got the standard 2 weeks of every other day injections (6 injections) than told you get your next injection is in 3 months. As clivealive says the treatment for those with neurological symptoms should be injections alternating days until not further improvement.

You need to go back to your GP and remind them about the extended treatment for those with neurological symptoms. Clive's quote is from the british national formulary which should be on your GPs desk and the guidelines below may also help you get the correct treatment which will hopefully help to improve your symptoms with time.

pernicious-anaemia-society....

It is also quite common for people to feel a bit worse before getting better when they first start B12 injections. Think of it as your body beginning to wake up again and begin to heal - it can feel like someone has turned the "volume" to max initially before your body gets used to the signals working better again!

[Sleepybunny]

Hi,

UK b12 treatment info

1) BSH Cobalamin and Folate guidelines

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 of listed guidelines

treatment info is about a quarter through document

Flowchart in BSH Cobalamin Guidelines

stichtingb12tekort.nl/weten...

2) BNF Chapter 9 Section 1.2

evidence.nhs.uk/formulary/b...

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn Hooper is the chair of the PAS (pernicious anaemia society). i gave a copy of this to my GPs.

"Could it be b12" by Sally Pacholok and JJ. Stuart

UK B12 websites

PAS website

pernicious-anaemia-society....

PAS tel no [phone]

Have you considered joining PAS? There are several local PAS support groups in UK.

pernicious-anaemia-society....

Martyn Hooper has an interesting blog .

martynhooper.com/

B12 deficiency info website

Lots of b12 info and interesting blog.

b12deficiency.info/

b12d.org

b12d.org

[Galixie]

You've gotten good advice from others. I just want to share a bit of my experience in case it might be applicable to you.

I was dizzy for years. Getting B12 did reduce my dizziness but never got rid of it entirely. I eventually discovered that I have gluten ataxia (despite not having celiac disease) and giving up gluten finally stopped the dizzy spells.

So don't rule out the possibility of there being another cause. I do hope you are able to get it sorted out. I know how miserable it is to constantly dizzy.