Recent visit to the Doc

I showed the doctor how my balance had improved by standing feet at hip width apart arms outstretched in front of me and eyes closed and I was steady(before alternate day injections I felt I was falling back) I also demonstrated how I could now walk heel to toe for several steps (previously as soon as I lifted one leg I would lose my balance and be unable to continue) He said you might as well stop doing the injections now that's probably as good as it will get. I resisted the strong urge to tell him what he could do using only 2 words and instead said what about the brain fog and all my other symptoms he simply shrugged. I left the surgery a little disappointed but determined to keep up with my self injecting and see what else improves. I asked him about my folate and iron he said they were fine no need to re-test, so I got some iron tablets and some folic acid tablets. Am I wrong to do this

7 Replies

  • Paul: sounds suspiciously like he is sulking, to me..... why, I have no idea !

    Keep up with the SI and chart what is happening, because it might take some time and it is heartening to see progress, however slow. It is also good evidence, for one day when your GP might decide to give a rat's. I would have thought that since you have done most of the work yourself, it would be common courtesy to keep a check on your folate and ferritin situation, ....if it wasn't THE JOB HE IS PAID TO DO !

    The more I read about other GPs, the more I like my own.

    The rights and wrongs of folate and ferritin? You can get good advice from people here who know much about how to survive without a helpful GP. Folate is Clivealive's department: fact.

  • All I would say about you supplementing with iron and Folate is either keep within the RDA or increase your "natural" intake via your daily diet.

    Without knowing your latest test levels it's difficult to be specific as I'm not a medically trained person like your doctor is supposed to be.

    Personally I have (self supplied) 1 – Folic Acid 400μg tablet

    and been prescribed 1 – Ferrous Fumerate 210mg tablet every day for more years than I can remember, but then I've had P.A. for 45 years and have cyanocobamalin 1mg B12 injections every three weeks.

  • Hello Clive, sorry to but in but just read you have cyano.c, is that because it works best for you? I'm a newbie to self injecting, and have all three types of cobalamin, and felt that the cyano was the best for me, but read it wasn't the best to use, would love your thoughts, oh had a methyl c injection the other day and made me desperately ill, but starting to 'calm' down now,

    Thanks liz

  • Hi Lizreds1

    When I was diagnosed with P.A in 1972 I was given two options - eat raw liver three times a day - or - have injections of cyanocobamalin 1000mcg every four weeks for the rest of my life.

    Much as I love baked liver with onions and gravy I chose to have the injections and within the last twelve months I have successfully "negotiated" to now have them every three weeks due to a return of some neuro symptoms in the run up to the next one.

    When hydroxocobamalin was introduced in the mid 1980s I had an allergic reaction and found I couldn't "last" the three months between injections so have continued on the "Cytamen" as my cyano is called ever since.

    Not everyone reacts the same to medications as your experience with methylcobamalin and mine with hydroxocobamalin highlights. At the end of the day it's down to what's best for the individual for as far as I'm aware the cobalt content of the three types is the same, but as I say, I'm not medically trained, just "clivealive" at over 75 :)

  • Agree with clivealive on the supplementation.

    Folic acid isn't likely to be a problem but too much iron can cause problems. You would only really need iron if you have an iron based anaemia or know that you are losing iron (most common reason for losing iron would be bleeding through menstruation which I don't think is going to apply :) - but even then the amounts needed would be small and diet would be a much better way to go).

    Well done on refraining from the natural reaction :)

  • Have you noticed any difference between standing with eyes closed and arms outstretched or down by your side. I am steadier with arms outstretched, but if I have them by my side I immediately start falling over. Not sure why it makes a difference.

  • Just tried this I am steadier with arms outstretched I had to double check in case it was because it had been suggested but still steadier with arms outstretched. I have no idea why will try to find out though,

    Cheers Chris 193

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