Another unnecessary interence which has led you to yet another battle to get your B12 reinstated back to what it was. 😱 My B12s are 2monthly.
I am in the same boat my gp is sending me to a neurologist I have never seen before. Infact when my dr wrote him I dont even think she mentioned my low B12 and most certainly hasn't done any test's to find out if I have pa !
I can see you and I being labeled with fibromyalgia if not already or functional overlay as a cop out.
This ongoing battle seem's never ending but your right it doe's need to be ammended. That ruddy nurse needs to keep her nose out of what doesn't concern her and I were under the understanding only gp can change your meds.
I think those with the chronic ongoing illness without a definitive diagnosis end up in wrong 'boxes'.It worries me that you have to be so assertive . Sometimes impossible if too ill. To get 'heard.'
PA / B12 symptoms mimic so many things...they have to rule out
With a diagnosis at least a care plan and reviews.
After the damage done the care for my daughter has improved as has a diagnosis
It's the early testing and listening.and acting Saves quality of life and money!!
So a better diagnostic 'tool'
Better recognition
Better training
A and E being used yet again as GPS not available
Morale is low
Managers with no medical backgrounds in my opinion does not work.
Like IT systems set up with no clinical experience
Acute care thank goodness still working
I think we are very low down on the list
My husband has type one diabetes. No review nothing for 2 years.
Agreed in every aspect. They are happy to hand out insulin which if used inappropriately is fatal but not B12 because pharma will lose out financially in a huge way. Paracetamol ibuprofen are spoon much more detrimental to the human body but you are free to buy them anywhere for pennies. There is no rhyme nor reason to medication and treatment just stats
Fibromyalgia, functional neurological disorder. Not particularly bothered with regards to that as I’m quite happy treating myself in the comfort of my own home.
Exactly.... take control and make your own adjustments. It's the way forward to recovery and normality. Especially hygiene..... at least we know we are washing our hand and our environment is clean before we SI.
Oh dear Nackapan ! I'm so glad that I haven't got an NHS app.
I have spoken about this before but it is really clear that a chronic condition firstly and desperately needs continuity with a named GP of your own choice, someone you trust. Secondly needs face-to-face so that observations can be made : a GP to whom you are familiar will notice if you are worse. Awful that this is not now available to any of us.
Being sent for tests, scans, consultant appointments is stressful, usually disheartening and generally ends with more answers to single symptoms: IBS explained away my daily diarrhoea and my SIBO breath test results, depression explained away my fatigue and mood-swings etc, Burning Mouth Syndrome explained my sore/coated/pie-crust tongue, having smoked in the past explained away my dizziness, B12 addiction explained away my need for frequent B12 .... until there is nothing left to analyse - again, requires a trusted and tenacious GP to see through this mess.
Nurses' personal opinions certainly not required on your notes. I remember one of the nurses, miffed that I was then getting 2 NHS injections a week, saying "did you tell the doctor you wanted this or did it come from a consultant's letter ?" (- like I had any influence !)
All were reluctant, even my favourite one admitted she had Googled "B12 and toxicity"- shame the others never bothered to inform themselves in this way, as afterwards she was more than happy to inject me. Another showed sympathy for my "poor arms" despite having told them time and time again that I couldn't actually even feel whether I was getting injected or not (and sometimes had a creeping doubt that they hadn't done it !)
Keep on with this. You've come a long way but need to get the record set straight.
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My doctor says too much B12 is Dangerous and Toxic ! (Tell me “A doctor” who says it’s safe and I’ll give you B12)
