Pernicious Anaemia Society

Help with symptoms

When diagnosed nearly two years ago with b12 deficiency, I had multiple symptoms which I have posted previously. I was (am) a vegetarian verging on vegan and my doctor had put me on a six month recurring prescription for omaprezole - he never discussed my diet with me and I think it should be blatantly obvious from a medical point of view not to give a ppi drug to someone whose diet excludes meat. But that’s another story!

I have been left with one recurring symptom which from the excellent support by the sites adminstrators I have been told is usual.

My recurring symptom was for a state of semi consciousness to occur then a sense of pins and needles and the sound of an old radio caught between stations - a form of tinnitus I have been told. Coincidentally, the three doctors that I have reported this too all state that it is not a symptom of b12 deficiency even though states that it is on the nhs site.

This symptom lasted for not much more than ten seconds and ended with a sense of euphoria and a feeling of having woken from a dream. My body was in a mild state of shock after and my fluency would be slightly affected.

I assume my condition is improving because I only get the opening stages of these symptoms - I rarely get the tinnitus and the symptoms last only about five seconds.

I receive injections every twelve weeks and dose daily with 1000 ug b12 which are cyan..... etc (too long to spell), 400ug folate and an iron tablet daily. I use an oral spray daily as well.

I tend to be fine fore four to five weeks after the injection then a get a week of the above improved symptoms then I am okay more or less until my next injection- this week I have had several short incidents per day but overnight I had about five occurrences.

There is no point speaking to my doctor! You would think that if a patient told him the full symptoms above and he did not think they were b12 related he would at least accept that the cause of the symptoms should be investigated and send me for a neurological appointment- he hasn’t!

Am I getting better? Has anyone had a similar symptom. I don’t recognise the vast majority of symptoms discussed on this site and most posts don’t recognise my recurring symptom which is probably why the doctor rejects it as a symptom as well.

I used to feel desperate but I don’t anymore. Before treatment I felt that I was developing dementia but my memory is virtually back to normal and, apart from when the symptoms occur, I have recovered my ability to articulate clearly as my aphasia and grammatical sequencing has improved so much.

And I am most grateful to the community for all your help especially the administrators all of whom appear to be so much more in need than certainly myself.

May your particular God bless you and have a good Christmas and, hopefully an improved healthy and very happy new year.

15 Replies
oldestnewest

Hi Alfabeta I just wonder whether your cyanocobamalin B12 injections should be given every four weeks instead of twelve as that is the usually prescribed interval.

I only know this because I've been having them every month for 46 years for pernicious anaemia.

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Thanks, Clive I always read your posts. You’re a real Saint. I have no chance of my doctor agreeing to that! He won’t even sanction 8 week injections!

According to the nurses - I am the only patient who has my symptoms or any symptoms other than fatigue. One of the nurses who injects me has had b12 deficiency but only injects herself every 12 weeks.

But thank you for your response I hope you have a nice Christmas

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There is nothing about being vegetarian that would prevent high stomach acid.

The tinnitus and peripheral neuropathy associated with B12 deficiency tend to be much less transient that the symptoms you report.

Indeed, what you describe sounds more like what I get during a migraine, without the visual field effects (flashing chains of light). And I've been having those for 20 years before getting PA.

I would press for a neurologist referral.

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Hi, thank you for your response. My point about being vegetarian was that I do not get very much b12 in my diet hence putting a vegetarian on omaprezole is medically foolish. I control my excess acid by removing from my diet food which triggers the acid - unfortunately one of these foods is certain cheeses which is one of my main food sources for b12.

As for the symptoms - I also post on the b12 site and have spoken on the telephone to the doctor who founded the site - he confirms that the symptoms are b12 deficient related.

One of the things that mystifies me is the relationship between b12 deficiency and PA. Most people on this site and you confirm it, do not have the full range of symptoms that b12 deficient sufferers have.

Thank you for your advice about seeking advice from a neurologist but I have spoken to one several times and they went down the path of psychological problems and had no faith in their diagnosis.

Merry Christmas and thank you for your help.

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Who told you you have excess acid? When low stomach acid produces much the same symptoms?

"Vegetarians don’t eat a lot of animal protein; vegans eat none. The body slows down production of HCl accordingly. This is one of the core reasons that a vegetarian diet (especially a vegan diet) can be very hard on the digestion: without that all important stomach acid, they’re not able to access the minerals from their food, properly trigger the production of pancreatic enzymes, or properly trigger the secretion of bile from the gallbladder. A whole host of trickle-down problems ensue. Remember: stomach acid has many roles above and beyond the digestion of protein, and with low stomach acidity, all of these functions will be compromised. Interestingly, it’s the secretion of HCl that triggers the release of intrinsic factor, which is essential to the absorption of vitamin B12 (yet another reason it’s so hard for vegetarians and vegans to get sufficient B12)."

eatnakednow.com/13-signs-yo...

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Thank you for your response. The article makes co pledge sense of what have and do experience.

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Folkestone,

only having some symptoms of a condition is common across a lot of conditions - so not surprising that it also applies to PA - we are all individuals - and there are so many factors that will differ from person - both in terms of genetics and how they live that would actually make it surprising if everyone developed the same symptoms. Left untreated I think someone would end up developing all or most of the symptoms.

what you are describing does really sound, as fbirder says, like a silent migraine. It may be that the cycle is 4 months - no idea what would trigger it but then many don't get to the bottom of what really triggers migraines - it actually probably covers quite a wide range of sub-conditions, or is a symptom of a wide range of conditions.

Many on this forum suffer from migraines in one form or another - mine are hormonally related and did get worse when I was B12 deficient but they have also got worse in the last few months which may be related to a developing thyroid condition or may be down to menopause. Whilst mine generally involve headache (and horrendous gut spasms) this isn't always the case and some will just involve visual disturbances and a bit of brain fuzz and some muscle weakness - though mine generally last for 24 hours +

you might find it useful to take a look at this form

healthunlocked.com/migraine...

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Thank you for your response- you give up so much of your time to help us all. I never associated the symptoms with any other health issues but, even so, I have discussed it with my doctor and nurses and they have just blanked me!

I will read the posts you directed me to.

Merry Christmas

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HI,

"I receive injections every twelve weeks and dose daily with 1000 ug b12 which are cyan."

Folkestone, are your NHS B12 injections hydroxycobalamin but you are also taking cyanocobalamin tablets?

BNF link about hydroxycobalamin which mentions injections every 2 months for people with neuro symptoms.

bnf.nice.org.uk/drug/hydrox...

Have a look at Treatment Section in next link.

cks.nice.org.uk/anaemia-b12...

It is clearly stated that advice from a haematologist should be sought for patients with b12 deficiency with neurological symptoms. Has your GP contacted a haematologist?

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

"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.

I am not medically trained.

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Thank you for your response but doctor, as I stated, is deaf as far as my symptoms are concerned. Two months ago I contacted the practice and was simply told my symptoms were not b12 related. He sent me for further blood tests. I stopped self dosing and waited eight days before testing and the tests came back that my b12 levels were normal.

What more can one do?

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Thanks - I think my doctor should know that hence, I suspect, he sends me for a retest just to ‘prove’ that my b12 deficiency is not the cause of the symptoms described which is fine if he would send me to a neurologist to ascertain exactly what is causing the symptoms.

However, the elderly doctor on the b12 site assures me that I am responding to treatment but, like just about everybody on this site, states that I should have more frequent injections.

Thank you for taking the time to respond it is so reassuring to know one is not alone and able to shares ones experiences.

Hope you enjoy Christmas.

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Thank you for your response what are focal seizures?

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Hi Eaoz

I’ve just read up about b12 and focal seizures and there appears to be a very clear link. I will pursue this area more thoroughly.

Thank you for your intelligent suggestion.

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Found this, although it is from 2004:

neurologyindia.com/article....

"The exact mechanism involved in epileptogenesis due to cobalamin deficiency is not clear. It is likely that cerebral neurons with destroyed myelin sheaths are more susceptible to the excitatory effects of glutamate.[4] Cobalamin deficiency may share similarities with multiple sclerosis in this regard.[5]"

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I have something similar to what you describe and I also have migraine. I don't get the euphoria you mention though. I can also now fall semi-asleep at any time if I sit and close my eyes. I've had very odd tinnitus lately with 'gunshot' snapping sounds and yes, the 'radio station'. I've also had a few incidents (but not many over a lifetime) where I've found myself on the ground and don't remember falling.

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