HEAD DOC

[may61]

So basically outcome of consultation with neurologist, is Head and neck MRI.Said sub acute combined degeneration of spine not in so many words.Doesnt think anymore B12 injections will make any difference, cos 132 is not low !!!.Contradicted pretty much everything that is on this web site regarding B12 deficiency ,says the injections will have flooded the body ,Didnt know what to say when i asked why my b12 had plummeted to 338 in 12 weeks .He says neck problems, prob wear and tear, have scan in next fortnight. Right side of body no reflex on knee, didnt feel injection in that arm, and that the foot that i burnt with,a Hot water bottle a few months ago that i didnt know i had done, until the skin peeled off .Glad I went, cos it has speeded the process up, it just the dizziness hard to cope with ,trouble is it the only way to get the next step speeded up or I could be waiting until maybe March next year.

[Sleepybunny]

"cos 132 is not low"

What? You have sub acute combined degeneration of the spinal cord and they think a B12 result of 132 is not low ?

"i asked why my b12 had plummeted to 338 in 12 weeks"

Your post suggests that you are only getting the standard every 3 months injections. With neuro symptoms it should be loading injections every other day until you stop improving then every 2 months.

Info on UK b12 treatment in BCSH Cobalamin and Folate Guidelines (about a quarter through document).

b-s-h.org.uk/guidelines/ click on "Diagnosis of B12 and Folate Deficiency"

Are you a member of the PAS? it might be helpful to contact them. I think the chair of the PAS Martyn Hooper, has sub acute combined degeneration. If you are a member you can access an article about SACD from the library section on PAS website. in some cases the PAS may be able to intervene by writing letters on behalf of members and can pass on useful info.

pernicious-anaemia-society....

[phone] Office open 8am till 2pm

[may61 in reply to Sleepybunny]

I Hav just joined

[Foggyme Administrator]

Hi May61. Well, the good news is that you have managed to get an MRI scan of your head and neck fairly swiftly...so well done for that.

Oh dear, another doctor who has no understanding of B12 deficiency (as I've said in a previous reply, whether or not you have pernicious anaemia is a moot point - you have B12 deficiency and this should be treated - as you know).

A level of 132, especially during supplementation with B12 injections, is seriously low. To put this in context, blood levels need to be above 1000 to effect neurological repair. So obviously, with a level of 132, this repair is not taking place.

If the neurologist is considering subacute combined degeneration of the spinal cord (which he obviously is), then you need to get your blood levels up above 1000 to prevent any further damage (and possibly heal some that has already taken place - though this is not always possible. Any you need this quickly.

In an earlier reply, I suggested that you print of the PAS leaflet about subacute degeneration of the spinal cord and take this to your GP so that he can be made aware of the consequences of under treating B12 deficiency.

As your neurologist has now raised this as a potential problem (even if not is so many words), it might be a good idea to go back to your GP, tell him this, and present him with the PAS leaflet - and point out the B12 levels needed to effect repair and prevent further damage.

Ask him to explain (and provide medical evidence) for his reasoning behind the decision to leave you with levels so low that your body is unable to heal. And he might also like to explain why he is prepared to leave you at risk of further damage.

You've done really well to get this far May61 and it might be that another big push with your GP might get you the treatment you really need.

I ask myself every day..oh why do medic's make this so difficult 😖. Disgraceful.

Hope you have the energy and determination to return to your GP for another 'bout'....

When all else fails with medic's, many people here choose to self-inject...if this is a route you are eventually forced to take, then there are plenty of people here who can help and advise about that.

Take care and good luck....let us know how it goes 👍

[may61 in reply to Foggyme]

I must admit that is under consideration now cos after 4 months I now realise that all your concerns regarding treatment are absolutely true You have answered a question for me though I wondered what the bloods needed to be to start and repair so at the moment mine will probably be about that but not for long Is there anywhere that is mentioned I must say that my jaw was on the floor at some of the stuff he was saying that the aneamia comes first followed by neurothapy symptoms sure that not right .Thank you for all the support and info , really appreciate it I suppose it was a means to an end really ,I get an MRI which will rule stuff in or out .

[Foggyme Administrator in reply to may61]

Hi May61. You're right...Approximately 30% of people with B12 deficiency (or low levels) develop neurological symptoms and have no sign of macrocytic anaemia - or PA.

The man was a numpty 😖🤔. Sometimes medic's come out with such nonsense it makes you doubt your own sanity.

And great news about the MRI - something that he won't be able to argue with!

Keep us up-to-date...

Take care 👍👍

[Sleepybunny]

"my jaw was on the floor at some of the stuff he was saying that the aneamia comes first followed by neurothapy symptoms sure that not right "

Think he might find it helpful to read the summary fbirder compiled from mainly UK B12 documents.

I take a copy of this summary with me to appts where B12 might be discussed as sadly have met too many doctors/nurses who don't seem to have a full understanding of b12 deficiency. Have you got a copy? Lots of useful quotes, which I have used to argue (politely) against some misconceptions about b12.

Link to his summary in third pinned post (last link in list). Also a link on his profile page.

Hope the PAS can offer useful info. there may be stories on Martyn hooper's blog that are relevant to you. the News section on PAS website can be interesting too.

martynhooper.com/

pernicious-anaemia-society....

[may61]

Thanks I am just starting to source self injecting but will wait until MRI results just in case anything else does come up But I am trying to get my head resolved to this See doctor late December and will have to make a decision soon Think the problem is doc never got my b12 above 1000 or has just for a couple of weeks and I now know you need to be about 1500 to enable repair Also i seem to use the b12 quite quickly for what ever reason Have started to take 400 folic acid twice a week now that my levels are a little better should i take it more regularly.I also take a multivitamin daily but wonder would b complex be better Thanks so much for your concern and replies.