He wants to do electric conducts on my body but believes my pain and conditions come from B12 deficiency.
He is aware I get ONE jab every three months and didn't want to challenge it.
However he was very intrigued to know I'm part of a forum who self inject and that I too self inject 3 times a week.
Im sharing this because I think (my opinion) that we must stop being afraid to share that we self medicate with more of what we need. I honestly think being transparent will help them realise we need more and it will help us gain it over the counter.
Interestingly he said the UK does not operate their health system like other countries and the way he said it, it sounded like he believes we should. Example being Germany or Netherlands.
I have increased mine this week as my mental health took a nose dive due to stress and I'm back up to feeling level again.
I swear b12 is the miracle drug we are all searching for.
Much love to you all ❤️
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Sunshine1932
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Your appointment sounds promising it looks as if you have found a neuro that has listened. The one I saw simply would not listen to my symptoms and didn't agree with myself injecting.
He requested a nerve conduction test and a cervical spine MRI of which I am still waiting the results. Before he had even carried out tests the swine labelled me with functional neurological disorder !
I am pleased to hear your experience was better than mine it shows there are some decent consultanta about.......it's just a case of finding them.
The request for a cirvical spine confused me too as I a have scoliosis of the lower ! It will be interesting to see what results come back as I also have issues with my neck.
Unfortunately my brain scans show lesions and wide spread small vessel changes but this is to do with my antiphospholipid syndrome ( sticky blood ). Looking back over the years I wonder if it were my low B12 that was the cause of my heart failure but nobody seems to join all the dots and give me answer's. Its much easier for them to fob patients off with a diagnosis of FND.
I have waited months to be seen in gastrology even though my hematologist has tried to chase the appointment up. SI has been the way forward for me thanks to this forum and other's advice.
"Macrocytosis associated with vitamin B12 deficiency is also associated with fatal and non-fatal coronary disease, myocardial infarction, stroke, and other circulatory health problems. "
The trouble is I have had TIAs and a stroke but with my sticky blood condition it is hard to determin what is caused by what - so the easy answer was to label me with FND ! I am under cardiology for a slightly enlarged aort but instead of the 6 monthly check ups due to the backlog of patients these have now become yearly.
Just the thought of going to another consultation fills me with dread. Very few prove to be benificial these days and as for my Drs surgery I find myself avoiding ringing them even when in a crisis. You can spend ages on the phone to be told Drs not in or ring back tomorrow because all appointments have gone. 🤬
I'm done fighting with them all. For me the solution is B12 so as long as I can buy it then I'm not going to worry anymore if they listen to me or not.
Yes indeed I have but at the present still at the ombudsman stage.
I am still waiting the results of the cirvical spine MRI which I know will be abnormal due to long standing issues. I have also contacted the FND support who are eager to veiw all results. I have said it before and will say it again - I no more have FND than a boil on my bum.
Look it up......it's a label they stick on people when they cant find answer's for symptoms. There is a FND forum on here which you can veiw by clicking on my hub at the top of the page.
I call it a way of writing patients off to save money and not carry out anymore tests.
Nothing quite about me as enough is enough and this is nothing other than gaslighting of patients. Such labelling of a patient like myself with multiple autoimmune conditions could put my life at risk if a health crisis was simply passed off as FND.
I cant even bring myself to use the term ignorance it is nothing other than corruption. 🤬
My consultant cannot see any Neuro damage other than the words out of my mouth as MRI and his MOT was all normal. Last thing to offer is the electric conduct or whatever its called. If its clear he said yes its B12 probably. When it comes to thar then I shall push for more than every 3 months but if he says no I will show him that this forum has 30,000 people fighting for the same thing.
Our voices will be heard but for the time being I'm grateful I can get mine from Germany.
Great to hear. Sounds like a nice, open-minded young Neurologist. And I agree, how else will the medical community/world understand the challenges of B12 deficiency and PA if we hide it from them?
There will always be resistance to start off. I was challenged on where I get the injections - they didn't care about my wellbeing, only where I got hold of the injections....i.e. am I involved in some sort of illegal drug cartel !! 😅
They don't know that we can easily get import it.
But perhaps awareness is increasing since rates of deficiency are on the rise. Processed foods, stressful lives, low meat intake, whippet misuse and even Covid are all making medics more aware of the challenges because more people are becoming deficient.
And they're quite right - why can't we be like more progressive countries. Even Canada and Australia sell it OTC - commonwealth countries. The UK should be leading the way on healthcare, not being led. OTC would simply make everyone's lives much easier.
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