SAME OLD SAME OLD

Had to see doc this morning after the near drowning last Friday.

Had prepared as the hospital doc advised. Printed the stuff from library, which was disregarded completely, as was quite honestly my neuropathy, which has become increasingly worse over last two weeks.

Challenged him again about loading doses , BNF out, new version,only shows for pernicious aneamia, which he hasnt been able to diagnose, no joy and it isnt on 9/1.2 in new version

Going toTIA investigation tomorrow cos he thinks i have had a slight stroke. . Wednesday bloods again cos he says B12 should be ok now.What about neuropathy?left arm now feels numb, my symptoms back where they were months ago,told him when he gives me B12injections my symptoms improve,he says it is placebo effect .This not looking good for further injections .

He waiting on results of MRI from neurologist later this week.Neurologist thinks neck problem wear and tear and that B12 of 132 not low.My doc says he treats all patients with the same loading doses and 3 monthly top ups.I have had more B12 injections than anyone else.

My B12 shows high he will be wanting it back .Waiting on results but where do I go then,

9 Replies

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  • pernicious aneamia, which he hasnt been able to diagnose

    Just because he hasn't been able to diagnose it, doesn't mean you haven't got it.

    I'll bet he's suffering from two misapprehensions -

    1. A negative result for an anti-IF (Intrinsic Factor) antibody test means it's not PA. 50% of people with PA give a negative result.

    2. Everybody with PA has macrocytic (large cell) anaemia. 30% of people with PA develop neurological symptoms before any anaemia.

    Ask him to prove you haven't got PA. He'll say he can't. You reply by telling him he can - if he can find an alternative cause.

    Download this document - frankhollis.com/temp/Summar... It includes links to a few expert papers and summaries of the important points and where to find them.

  • the placebo affect can only be used as an explanation if there isn't a possibility that the treatment is actually the cause of the improvement - which most definitely isn't the case with B12 ... can feel myself screaming inside. Why don't these people understand statisitics, placebo effect and why can't they treat their patients like patients rather than diseases.

    The BCSH guidelines are for diagnosis and treatment of cobalamin and folate deficiencies - PA is mentioned as a potential cause but so are a lot of other absorption problems so obviously can't read either ... unless there has been a re-issue since 2014 in which case I would have expected that to be on the PAS website.

    Suggest that if you haven't done so already that you join the PAS

    pernicious-anaemia-society....

    and then contact them -they can advise you on what to say to your GP and can sometimes follow up on your behalf.

    martynhooper.com/2016/09/23...

  • joined a couple of weeks ago and did think about speaking to them Thanks for the advise

  • Gosh yr gp has such a closed mind. Can you change doctors? Yr current one is certainly not taking yr symptoms seriously enough. I complained for 10yrs of phases of completely numb hands, progressing to muscle pain, dizziness, brain fog. Bloods were apparently "normal " how I hate that word. Now I supplement myself with high dose sublingual methylcobalamin form of b 12, no more numb hands and vastly reduced other symptoms. Consultant and gp disbelieving although admitted they could see the improvement, now they panic over my high levels.

    Also be warned that the longer you have nerve symptoms it can leave a lasting effect, my left (worse 're numbness) hand deff has less sensitivity to the other hand now.

    Good luck, I'm sure you will improve now you are researching and helping yourself

  • Have been taking sub lingual cynacobalamin for about two months which my daughter takes Had bought methyl sub linguals at about the same time When i took one of the methyl ones I felt dizzy, but now know it wasnt that that caused the dizziness.Now have just started to take one a day, which I presume is ok, I also take a multi vitamin daily and will take folic acid a couple times a week .

    Doc did my bloods last week. after i had been in to have scans etc took 3 phials, only got one sheet back, which said b12 1336 Stop injections But had had the four injections beginning of nov Isaid would expect them to be about 1000. Very curious .!st consultant i saw in nov, the neurologist, on his letter said continue with injections,and couldnt understand why he was doing bloods.The TIA consultant the other day just said b12 back to normal Decided to take methyl to keep my levels up after 4 injections in early nov .Yes have already made the decision to move docs cos I am 61 at the moment, just retired, Hubby had a v bad breakdown two years ago, health isnt goin to get any better although we do take good care of ourselves

    Just feel so sorry for all those out there who are in a much worse place than I am .And believe you me i am one of the worlds worst patient

    By not treating me correctly initially the cost to the NHS is now MRI, Cat scan ,2ultrasound on neck at least 10 doctors appointment in 5 months, 4 of which I have been accompanied and have seen two consultants .Oh Dear!!!!Take care

  • From what I understand once you are supplementing with b12 by tablets, injection etc it's not worth testing as the bloods will show high anyway. Try and Google the BMA advice , then take copy to yr gp. Take care x

  • Exactly Last time I took printed information with me he totally disregarded it HE KNOWS BEST

  • Sad that so many GPS are stuck in dark ages, time to try a new one I reckon, can't be worse. Hope you can still hve a good Christmas x

  • Merry Christmas and happy new year 🎁🎁🎁🎉🎉🎉

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