I’ve got to admit I’m getting better, getting better all the time?

[Alfabeta]

Hi All

I was diagnosed b12 deficient over four years ago and had multiple symptoms prior to and after the injections began.

Fatigue, blurred vision, ended very quickly.

Memory issues began improving very quickly as did aphasia but took a long time to cease to be worrying.

Tinnitus ended after about 18 months. This used to be the beginning of multiple episodes lasting about 10 seconds - tinnitus followed by auditory hallucinations occurring during a sudden oncoming of semi consciousness. These events usually occurred midway between injections.

The auditory hallucinations ended after about 2 years leaving just the bouts of unconsciousness which continued to occur midway between injections.

These events have not recurred during the present cycle - I am in the seventh week since my injections and, since the NICE guidelines have changed my injections are now every 8 weeks instead of 12.

However, touch wood, I seem to have left behind the major symptoms of my illness.

In the last year or more a new symptom appeared which most people allude to as pins and needles but which is much better described as small fibre neuropathy. Although a minor irritant compared to what I have been through, I wondered if anyone knew whether my changing symptoms are leading to being evidence of being cured or simply just an indication of the illness entering another phase?

I have never had anything in common with those posters who describe the symptoms of PA - my symptoms are related to damage to the myelin sheath hence I am assuming that one can have one or the other due to b12 deficiency but few people have both - is this a correct assumption?

My major problem with the doctors and nurses that I have seen is that they understand PA but do not understand about the damage to the myelin sheath. The reason for this is, I believe, is because the symptoms caused by the damage to the myelin sheath and the multiple symptoms that this causes cross reference with a number of very major illnesses including depression and MS in fact a very long list. I think this explains why so many people have been taken down medical paths when really though only needed b12 injections!

Sorry that my post is a bit of a ramble and highly speculative but it’s impossible to have this discussion with a doctor or my practice nurse. I told the doctor about my small fibre neuropathy and he just looked blank whereas my practice nurse asked about my alcohol consumption because, as said above, the symptoms occur in a multitude of illnesses and small fibre neuropathy is a symptom of heavy alcohol consumption.

But it is amazing that everything will be considered but b12 deficiency in my experience and in the experience of many people who post on here.

But, I have to admit I’m getting better, getting better all the time even if I am not entirely well or may never be fully cured.

Good luck and better health.

[Foggyme Administrator]

Hi Alfabeta. It's really good news to hear that you’re doing so well.

But I'm just wondering about your new symptom - small fibre neuropathy - which appears to be occurring four years after commencing treatment. As you recognise, there can be many causes of this (not just B12 deficiency - or alcohol consumption 🙄), so wondering if other potential causes have been ruled out by your GP (diabetes, hypothyroidism etc.).

If your GP does (or has) ruled out other common causes for neurological symptoms, it would be usual to refer to a neurologist to rule out (or in) other potential underlying causes?

Just suggesting this because myself (and others here) have discovered that neurological symptoms originally believed to be due to B12 did, in fact, have other causes. (There have been reports of neurological symptoms not being relieved by B12 injections and also reports of neurological symptoms worsening or arising as new symptoms post-treatment with B12 injections).

In my case, initially resolved neurological symptoms re-emerged, worsened, did not respond to increased frequency of B12 injections....and were subsequently found to be caused by an underlying autoimmune condition (not that I'm suggesting that you have one of those - just that further investigation would be prudent).

I agree that many people are taken down medical paths unnecessarily when what's needed is treatment for B12 deficiency. However, when treatment is being delivered and nee symptoms appear, fail to resolve, or worsen, then it's prudent to rule out other potential causes. Even if only for your own peace of mind.

Good luck 👍

[Alfabeta in reply to Foggyme]

Thank you for your very sensible advice. I hadn’t thought that I could have a completely new condition. My personal problem is that I have absolutely no trust in the doctors at my practice or medical professionals in general. Mention b12 to my doctors or nurses and you can see by their faces that they are putting one into a special category - pain in the posterior- to put it politely.

My partners father has diabetes 2 and receives little if any reasonable treatment and, as you probably know the drug they proscribe is on the list of b12 deficiency causes. The condition can be cured by a change in lifestyle but, like so many people, he refuses to adopt this approach!

On my recent medical at 70 years, I was found to have a health age of 72 based on slightly raised cholesterol. I’ve tried for over 4 years to get my injections every 8 weeks instead of 12 but my practice totally refused even though it was obvious from my symptoms occurring between weeks 6 and 7 that there was a fair likelihood that it was because my b12 was running low yet I was immediately offered statins for slightly raised cholesterol when, again, one can simply change ones lifestyle to reduce cholesterol.

I do check the NHS site regularly for symptoms and causes and have checked all the illnesses related to b12 type symptoms and continue to do so. A GP is a generalist and uses the same information that is available to us all on the internet and we, as patients, have more motivation than our doctors (at least in my experience) to determine the causes of our illness.

It is my intention to seek medical advice if the small fibre neuropathy continues - at the moment it fluctuates with whole day’s without any and some days it comes and goes and other days it’s constant. Taking b12 tablets does seem to reduce or make it cease altogether.

Thank you so much for your advice I find your blogs so informed, caring and sensible.

[Foggyme Administrator in reply to Alfabeta]

Understand perfectly about doctors Alfabeta...I have one the same...as do many others here. Sadly.

It might be interesting for you to hear that the BNF (doctor’s prescribing guidelines) have now change the prescribing guidelines for B12 injections to every 2-3 months, so there's no reason why your GP cannot prescribe your B12 injections 8 weekly.

Here's a link to those guidelines:

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

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

Your GP may be using an older copy of the BNF which doesn't yet show the amended treatment guidelines - they can look it up online or take a printed copy from the above link.

It's interesting to note that additional B12 has a beneficial effect on the neurological symptoms...perhaps the answer is more frequent injections. Certainly, if your symptoms are returning in weeks six and seven this would indicate that you do need more frequent injections. Though trying to get some GP's to recognise this is not easy. To say the least!

Try for the eight weekly injections (no reason for them to refuse - it's in the treatment guidelines)...but if your symptoms still return before the next injections is due, then might be worth considering self-injection (or, as oral supplements do appear to work for you, then take high dose supplements on a regular basis along with the injections (rather than just waiting for symptoms to return).

In short, and as you probably know, the one-size-fits-all treatment regime 'fits' very few people. The right amount of B12 is the amount that keeps symptoms at bay. Any GP who is knowledgable about B12 deficiency would have no problem prescribing an injection frequency that 'fits' the individual and keeps them symptom free and well. Sadly, too few do.

Good luck 👍

[Alfabeta in reply to Foggyme]

My doctor agreed to 8 weekly injections and I am on the new cycle now with my second injection next week although he did try to off me 10 weeks but I insisted on 8 and he reluctantly agreed to 8 but only for a year. This was the same doctor during the same consultation who offered me statins for a 20% risk of heart and stroke possibilities! And a previous doctor put me on omaprezole with repeat prescriptions every 6 months and never checked that I was a vegetarian with very low b12 in my diet! He gave me a drug for acid reflux when a more carefully managed lifestyle and food regime would have done a better job yet refused totally to give me the b12 injection regime to repair the damage he was partly responsible for!

I read in the paper today that walking 15 to 20 minutes a day will do more to reduce cholesterol and improve heart health and reduce the chances of a stroke than taking statins.

I just do not get doctors! They’ll dole out any number of drugs for illnesses due to lifestyle but won’t give one the b12 one needs.

It beggars belief.

[Foggyme Administrator in reply to Alfabeta]

Beggars belief indeed! 8 weekly - but only for a year - nonsense!!

I'd like to see the prescribing instruction in the BNF guidelines that states 'but only for one year'!! Ha to that.

Keep at him...as I'm sure you will 😉👍

[Nackapan]

I'm very pleased you have made such good improvements. You are so right with the GPS and nurses. I give symptoms and recieved blank faces. Also gave been offered so many antidepressants . They even went down the route of possible domestic violence. I actually went to see a neurologist recently as wanted an explanation for symptoms ongoing that the Gp had no idea about. Although mixed I found it reassuring nothing missed and I'd done to b13 nerve /myalin sheath damage. So always good to get to see the right specialist to check this out. It is like saying healing takes as long as it takes. I believe ongoing . No one really knows as so individual. I was told by last neurologist post concussion syndrome too. This one disagreed . So lots of theories to the damage done. Not so many solutions. Thsnks goodness for B12 injections. !! I wish you continuing better health and thanks for posting.

[pvanderaa]

Congratulations. You will find plateaus in the progress and you may be at one of them now as you are not seeing much progress at the moment. These can be very disheartening but stick with your regime and no backsliding as you really are on the edge of a cliff and things can get worse pretty fast when the repair regime gets upset by anything.

Worry leads to stress and stress just consumes B12.

Have you been keeping a logbook of your symptoms and assessing a severity score? When you get to one of these plateaus, it seems pointless to keep doing it. Maybe drop to weekly or just the week before and after the injection.

The tricky thing about symptoms is that when they disappear, you just get on with life and forget about them until a little upset occurs and they reappear. Then you realize that they were gone for a while.

If you reset the logbook to day zero at each injection and compare the symptoms on day 3 to the same symptoms say six months ago on day 3 after that injection you will see your real progress. Day to day and week to week comparisons don’t show much as repair of nerve damage is soo soo very slow.

This had been my experience and I’m not medically trained.