Another letter

[Nackapan]

Changed my mind and wrote to the neurologist i Iast saw . He is b12 deficient himself but caught early and although admitted some if his patients do well on more frequent Injections it shoudnt be necessary. I was on 2 weekly when I saw him .I went mainly for head pain light sensitivity and varying headaches/migraines.

As the Gp wont prescribe b12 for SC or mention prescribing for IM and suggested I contact the neurologist who condoned such frequent injections!

The other neurologist condemned them saying they were toxic. Quite upset me at the time as only thing helping.

G.p had a different tone after meeting with other Gps to discuss. I know their views as seen them all.

I've asked for an NHS prescription for b12 for injecting at home SC . I know it's been prescribed ' off licence ' like many many drugs elsewhere. (I didnt put that last bit in)

I said in the current crisis it would be safer for the nurses free up time and safer for me . I would then only go to the surgery for IM monthly or 2 monthly if all goes well not at all! I also mentioned how many are not even getting their injections

I quoted I'm a member of The Pernicious Society. Information available for medics. This neurologist is at the height of his career having only recently retired from the NHS

So with a personal interest too I will see if I get a reply.

I'm all set up now as SI

This gives me the chance to do this.

I feel strongly we should not be pushed to SI but it be a choice . I believe in transparency. I'm keeping stumb at present which is against the grain but necessary until a change .

.

[Cherylclaire Forum Support]

What a drain on your valuable resources this has become .

You have done so well to get to this point, and dealing with such antipathy !

You have a complex set of symptoms, undeniably, and it is clear that expert opinion was necessary for any one of your GPs to be able to help you effectively.

It really becomes ridiculous though when one neurologist suffers from B12 deficiency and can see beneficial effect of frequent injections in some patients, while another is of the opinion that B12 a toxin and therefore can't see anything! Since GPs are reliant on their decisions for treatment guidance, they really need to get their act together.

What are GPs supposed to do now : take the best out of three ?

Also a drain on NHS's valuable resources.

Some perspective required here: would one neurologist regularly take a vitamin that another neurologist seriously believed to be toxic ? *

B12 injections can be administered, for those with an inherited inability to process it at cellular level, twice a week. This is the advice given to GPs from consultants in metabolic diseases. Sometimes ignored, much to their frustration.

Glad you have all you need to hand.

Let us know if you hear anything .

PS: Not that toxic: I just worked out that I've now self injected 425 times. And yet, here I am, still alive. A little stir-crazy, perhaps....

[Puncho in reply to Cherylclaire]

What is your B12 level since you have injected so many times. Mine is 2000 no

Matter what I’ve done. Tech at Labcorp said it could even be higher. That is there cut off in the labs. Same results at Quest labs. Yet I’m

In chronic Nerve pain all the time. Fatigue not diabetic. Constipation. Can’t hardly walk.

Dr gave me B12 to inject. The others say it’s not necessary. Say it’s toxic I have enough stored to last years !!!! So confused

[Cherylclaire Forum Support in reply to Puncho]

Yes, mine also was over 2000 ng/L which means past measurable, although at first it was 196 ng/L (range luckily started at 197 ng/L !) . Last measured in 2016 - after that, GP quite rightly said that there was no point in measuring it again. Not worried.

But I am the opposite of you in that I am improving. It took 2 years of self injecting to make this amount of difference. Yes, still wake up yawning sometimes, and daily diarrhoea - less of a problem but no real change in 5 years. The walking though: I used to force myself to get back up the hill crying and it took me ages as it felt like an elastic band just above knees was stopping me. That never happens now.

Haematology, gastroenterology, neurology, dietetics, metabolics, CT scans, x-rays, MRI scans electric nerve test, hydrogen breath test etc later, nothing concrete.

I've heard enough unsupported anti-B12 alarmist speak over the years from consultants, but never once has any alternative proved viable or useful- or emerged indisputably from all this testing.

One thing that I found really useful: 15 years of angular cheilitis (cracks at corners of the mouth that can be sore, dry and peeling or bleeding) can be vastly improved just by one-touch nipple cream twice a day! This was from an oral medicine consultant - who also was concerned about my B12 self-injection frequency, and pointed out that, once over 2,000 ng/L, it could be increasing- that there is no way to tell. I tried, because I liked him and he made sense, to reduce injections from every other day to about twice a week- I tried once a week and it proved to be a step too far - symptoms either worsening or reappearing.

This is how I work out what I need now. None of them are gone for good I believe, and need also to keep an eye on ferritin, folate and vitamin D as all of these can also be very up and down for me, although I think now finally controlled. This is the best I've felt for five years, but also have adapted life to suit ability: for instance, went from full-time tutor to 15 months off sick to 2 days per week support teaching . This would never have happened if I hadn't self injected: I would not have been employable.

I have never had a symptom-free day yet, not in 5 years, but getting close.

This sounds worse than it is- although I didn't feel the first 6 months of injections at all in that I never realised when/if they had been done, I haven't had too many neurological problems or pain, or any headaches, for instance - and I have got as far as I have by accepting a lot of help and advice from this forum, accepting finally that this isn't going to go away completely, and by having a supportive GP.

What was your level to start with ? What were your symptoms? Are you keeping a record of what happens : improvements being often very slow, almost imperceptible ?