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Pernicious Anaemia Society
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Neurological symptoms

Hi, I would like some advice please

After numerous visits to my GP, all manner of tests and a steady decline in my overall health, I started seeing a herbalist. Despite all this my health continued to worsen and because of extreme fatigue, weekly migraines which put me to bed for 24/36 hours plus the brain fog and temporal neuralgia and no explanation I made the difficult decision to leave my full time job and go part time. It made no difference and I was in total despair until my herbalist told me I was B12 deficient.

I promptly got a blood test and went back to my GP.

B12 levels 167 folate 17. A quick look back 12 months and my B12 was 296.

I have had very low platelets also (GP has been concerned) low white cells and low thyroid (for years)

Had the loading dose (finished 2 weeks ago) and GP has now put me on the 3 monthly shots.

Coeliac test came back negative as did the anti intrinsic factor and I eat a very healthy diet. I do however have chronic gastritis confirmed on endoscopy 7 years ago.

I dipped initially with the shots and decided after reading the posts that I would purchase my own B12 and SI weekly so I have had a further 2 shots.

I also take a B complex supplement.

In the last week I have had significant improvement and I'm feeling like my old self again (I was always very active) now getting a weekly headache which is manageable.

My question is, is brain fog, migraines and temporal neuralgia considered to be neurological signs and therefore to be treated with more B12 or not?

My GP is not interested in my symptoms only the blood results and I have had far more information and helpful advice on this site than anywhere else.

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honest answer - brain fog could probably be argued to be neurological but could also have causes that aren't neurological (eg anaemia and not getting enough oxygen to the brain could also cause this symptom), migraines probably not, neuralgia would be neurological.

Unfortunately because symptoms could be caused by more than one process that uses B12 not working properly it gets quite difficult to say for sure what is causing what symptoms.

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Sadly if you live in the UK your Dr will only look at what the guidelines tell him/her.

The B12 blood test is known not to test correctly. As there is Active B12 and Non-Active B12. But the test doesnt distinguish. So you could have a result of 500 but actually only 12 could be Active.....

Until guidelines are updated (which could be another 3 yrs) i would continue SI. Its cheap enough to buy yourself and trust me. The side effects of not having it often enough and the long term damage it can cause. It is not worth relying on the NHS with 3 monthly injections.

I would recommend you buy the book 'forgotten disease pernicious anemia' off amazon. The guy who wrote it is the head guy for the Pernicious Anaemia and its got some really interesting research and stories in from other sufferers.

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Thanks so much for that I will look for the book right now!

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