I took the health assessment and was asked to share my experiences so here goes.
If you bore easily, I should stop now!
I noticed several years ago that I was having problems with my speech - unable to complete sentences, forgetting words etc. Then I noticed memory problems - if I watched a serial, I would have no memory of the preceding episode.
Then I had a series of medical traumas - my vision would become totally blurred all of a sudden; on other occasions I would have something similar to a petit male only with a tingling all over my body and tinnitus followed by a euphoric dream like experience - these episodes lasted about 10 to 15 seconds.
I went to the doctor and was diagnosed with very low b12 and given the 6 loading doses then an injection every 12 weeks. My doctor refused to believe that I had neurological symptoms as the symptoms described above were not caused by b12 deficiency. I spoke with a specialist through Benenden hospital twice who also said that my symptoms were not b12 related and started to take me down the mental health route - no-one offered me a specialist and I have been very wary about talking to doctors about my problems - their ignorance of. B12 deficiency it's symptoms and solutions have bordered on malpractice in my opinion.
I lost most of the symptoms very quickly - exhaustion stopped immediately, blurred vision mostly and my memory and speech have improved significantly.
I have continued to have the'petit mals' and tinnitus etc. But in the last six months or so the tinnitus has stopped almost entirely.
It seems that the injections have and are working to remedy the symptoms but the petit mals mentioned above continue. They seem to occur several days after the injection then I am fine for about six weeks then I get a sequence of them . In the last cycle I had a five day period with up to six short events lasting about 10 seconds maximum. After my last injection I had several events and now, this week - around 35 days since my injection, I had six event on Monday - three during my sleep and three during the day each lasting no longer than 10 seconds and with no tinnitus etc.
Yesterday I had three events.
Today? Well one lives I hope. If last month is like this month, the. Events will cease for the next 6 weeks prior to my next injection.
I supplement daily with 1000mg b12, 400mg folate and an iron tablet. I also have at least 4 sub lingual sprays throughout the day.
Best case scenario is that I am getting better unless anyone knows. Better!
I have had my heart tested and I had a brain scan and both did not reveal any problem.
I am a vegetarian verging on vegan and my doctor put me on omaprezole for over 4 years which probably accelerated my b12 deficiency.
I hope this blog is of some assistance to fellow sufferers.
Good luck and good health
Chris
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Alfabeta
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"unable to complete sentences, forgetting words etc. Then I noticed memory problems"
These would usually be considered as neurological. Not being able to find the right word is called nominal aphasia and I think is listed on PAS Symptoms Checklist.
PAS might be able to pass on info about PA and neurological symptoms. PAS can sometimes intervene on behalf of PAS members seeking correct treatment/diagnosis.
You mentioned in one of your older threads that you didn't think you had PA.
Have you had a test for PA eg Intrinsic Factor Antibody ()IFA) test?
The IFA test is not always reliable and it is still possible to have PA even if IFA result is negative/normal range (called Antibody Negative Pernicious Anaemia). I believe that Martyn Hooper, chair of PAS, tested negative more than once on IFA test before testing positive.
Antibody Negative PA is recognised in UK in the BSH Cobalamin and Folate Guidelines. I'm not sure if Antibody Negative PA is recognised in other countries. Sadly if you're in UK, you may have a GP who hasn't read these guidelines. I gave a copy of these guidelines to my GPs.
Outlines when PA and Antibody Negative PA can be diagnosed in UK.
My understanding (I'm not a medic) of the BSH Cobalamin and Folate guidelines is that anyone in UK who is symptomatic for B12 deficiency with neurological symptoms eg tinnitus, tingling, pins and needles, memory problems, balance issues plus other possible neuro symptoms should be on the neurological B12 deficiency treatment regime, whatever the cause of their B12 deficiency.
UK B12 treatment info can be found in
1) BNF British National Formulary Chapter 9 Section 1.2
All UK GPs will have access to a copy of BNF, it's probably sitting on their desk or bookshelf. It's possible to get own copy of BNF.
Thank you for your very helpful and caring response and highly informative response. I am trying to get a doctors appointment at the moment but not having much luck.
Might be worth talking to PAS before next appt with GP. They can offer support but they are busy and may not have resources to help non-members.
I would suggest reading up about B12 before next appt. My experience is that B12 deficiency is not always as well-understood as it should be, by doctors and consultants including haematologists and neurologists.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines. I gave a copy of book above to my GPs.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive book about B12 deficiency with lots of case studies.
Lots more B12 info in pinned posts on this forum. I found it helpful to read fbirder 's summary of mainly UK B12 documents.Link to summary in third pinned post.
Do you have copies of all your blood test results? I learnt to always get copies after being told everything was normal and then finding abnormal and borderline results on the copies.
If you have a copy of b12 result from when you were diagnosed with very low B12, have a look to see if there is a comment from the laboratory that carried out the B12 test, advising that an Intrinsic Factor Antibody test should be ordered. You could then find out if an IFA test was carried out and what the results were.
In relation to B12, I look at B12, folate, ferritin and full blood count (FBC).
Your advice is timely as I spoke to my doctor today on the phone about my issues. I am to cease having b12 until I have a further blood test to see if there is enough b12 in my system. Yet again I have been told that my semi conscious events and tinnitus are not b12 symptoms which just about everyone who writes about b12 deficiency accepts as symptoms.
The doctor told me that my level was 116 when I was initially tested - is this very low and how low in the scheme of things?
I am to cease all b12 supplements and injections until my blood is tested to ascertain my b12 levels but no mention of folate or iron levels although as a vegetarian verging towards vegan my folate level should be ok.
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seeing neurologist, advice on b12 injections welcomed…
Serum ferritin too high?
About German online Pharmacies. — If they follow pharmaceutical rules rules,they are not allowed to supply U.K. with B12 ampoules! 
