Thanks from Cherylclaire

So glad there is you! Massive thanks to all who have kept me going- even very recently I was wondering why bother keeping on at the doctor. However with all your support and advice, I kept on track and now have a doctor who understands my condition as an individual, and has spoken to the receptionist and nurses about my appointments for loading injections and what happens next, and everyone is now following the doctor's lead; It seems this is new ground for them. The doctor acted to increase injections and a longer loading period because 3-monthly was useless to me. She just needed to have confirmed by tests what she was seeing with her own eyes- and the MMA test did that. She had requested this locally with no response, so went via St. Thomas', after seeking advice from a haematologist.

For those about to give up:

I first went to the health centre with various (I believed unrelated) symptoms about 22 months ago and have since been to dietician, Hospital: bowel department and gastroenterology (soon), physiotherapy, x-ray, CT, MRI and only ever refused treatment for depression. Keep going, even if it feels like endless elimination! Take someone with you, and ask people here for advice or support: it's there in bucketloads!

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  • Hi Cherylclaire. Wow, that is very good news indeed so well done for persevering.

    This is the second post I've read in the last few days about a GP who is 'coming up with the goods' and actually treating a 'dificient' properly...so two GP's who deserve a gold star in such a short amount of time has got to be a record! A record we need to beat every single day, I would say πŸ˜€.

    So thank you for posting and letting us know...it's uplifting posts like this that keep people going when the going is really rough.

    Hope your B12 jabs have you up and jigging in the very near future.

    Let us know how you get on and keep posting if you need any advice or support.

    And a very big well done πŸ’‰πŸ’‰πŸ˜€πŸ˜€

  • Well, Foggyme, funny you should ask because there are a couple of things:

    1) What do the little squares mean at the end of a sentence? (I'm a bit new to social networking)

    2) I'm hoping GPs, busy as they are, still get the chance to talk to others especially in the same practice, which means potential domino effect when it comes to diagnosis/treatment changes!

    3) I'm seeing noticeable outward improvement and partner says I've got sense of humour back etc. but still worried about my levels of concentration: having to focus so intently on what is being said that I have to turn off music/ TV and even still find it difficult to understand meaning. Memory awful still. Also still not confident about doing much in one day, and needing to stay local, get back before mid-afternoon, when likely to turn into a pumpkinhead and then find it difficult to make any decisions etc. -finally get home exhausted and need to lie down or sleep. Do you think these things too can be eliminated? [Bit worried about my job: obviously not able to teach like this!]

  • Hi Cherylclaire. Not Sure what you see on your screen but what I see at the end of sentences (the little squares?) are little faces (smiley, sad, angry, crying etc, depending on the emotion to be conveyed - they're called Emoticons). On some IT platforms you can't 'see' these properly, but will see squares, brackets, colons etc. depending on the emoticon inserted. To demonstrate, here's a smiley face πŸ˜€ If it appears as squares or brackets or....(get the picture) then whatever you're using to access this site does not support emoticons.

    Agree about GP's and getting time to talk to each other. Would hope so - but it seems to me that they only talk when they want to stop something (usually B12) rather than cascade good practice. But fingers crossed....

    Really pleased that you're starting to see some improvements. Some people improve all at once after a couple of jabs or over a few weeks: for others, it can take longer. We're all different and it also depends how long you've been deficient. But please don't despair...you should find further I provement over time.

    I know exactly what you mean about the midday pumpkin head feeling. Been there. Done that. Still do it sometimes πŸ˜–.

    The most crucial thing is that you get the right amount of B12 to facilitate full recovery. Just make sure that of you have neurological symptoms, you are on the right B12 regime. Most GP's don't know about this or know what it is (basically 1mg Hydroxocobalamin e dry other day - after the loading doses - until no further improvement, then every eight weeks.

    This eight weeks regime is still not enough for some people so come back for more advice if you think that you need B12 more often (i.e. If your symptoms return before your injections, on a regular pattern). Some people keep a symptom diary so that they can track and monitor their symptoms appearing / disappearing so that they can learn to recognise when they need more B12.

    Really hope your employers are understanding about this? If you work for a local authority then there should be good arrangements in place for a phased return to work (all good employers should offer this), so that you can return at a rate that fits in with your recovery (i.e a couple of hours, say two or three times a week, gradually increasing to your usual hours - doneat your speed, not theirs). It's not unusual to have this sort of arrangement - a return to work plan is usually put in place, by agreement, before you go back. But you should not have to back before you're ready πŸ˜€.

    Good luck with it all, emoticons included πŸ˜€ X

  • Hi definitely a gold star for your GP.

    If you're not already a member of a teaching union it might be worth joining one in case of needing support with a phased return to work.

  • Hi Sleepybunny, how are you?

    Yes, GP has worked hard to find evidence necessary to support what she could see: that 3-monthly injections were not nearly enough for me. Justification still required- so really glad MMA was high. Some resistance from one of the nurses today.... this is relentless, isn't it? So tiring.

    As far as work goes, I'm not local authority and not in a union either. Have told employers about my situation, and so far, they have been supportive. I have been there for a long time with a good track record, and have been very honest about deterioration- and tests, doctor/hospital appointments and physio etc. They are aware of memory and cognitive problems etc too.

    I broke my arm at the end of June. It has mended but little strength and movement - rotation at shoulder very limited. Had an MRI scan on Sunday night to check if muscle/ ligament damage.

    -So physically and mentally "could do better"! Working on it, Sleepybunny! [smileyface]

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