To everyone who replied to my latest post about haematology appointment and their letter to my GP

[Cherylclaire]

Computers down at local library, so have gone elsewhere and I am massively relieved to find so much support waiting for me to log on. Got it wrong: appointment is tomorrow morning, not Tuesday. Blame the recent dearth of B12 for that !

I cannot find anything either about animal testing for B12 overdosing but will try to find out if I get the chance. Really, wouldn't you think that the researchers would be concentrating their combined energy on the ill effects of B12 underdosing ? It would be so easy to do and they wouldn't need to use animal testing at all: we are right here.

Understandably, my GP is caving in about the frequency of injections - probably under pressure from both specialists and nurses - and feeling out of her depth. But that makes me feel even more vulnerable and alone - without all of you, don't know if I could do any of this. Probably wouldn't bother at all with the appointment.

Will let you know what happens. Many thanks xxx

[Foggyme Administrator]

Hi Cherylclaire. I've left a reply on your previous post about things you could try to get the treatment you should be having.

I think you're being far far too kind...'understandable' that your GP is 'caving in' about the frequency of injections...not from where I'm sitting...she's effectively withholding the correct treatment for those with neurological symptoms...treatment that is clearly stated in all the guidelines (boy, am I cross on your behalf).

And given your proven functional deficency...it's even worse, because the only way to treat this is with frequent high doses of vitamin B12.

She may feel out of her depth...but reading (and digesting) the information you've given her shouldn't take very long...looking on the PAS website (they even have a section for medical professionals)...well...with her medical training....within 30 minutes she'd know (or should know) exactly how she should be treating you. And nurses be d*****d (speaking as one who used to be one). I'll-informed consultants too.

Boy...I'm so so cross...still...can't you tell....on your behalf 😖😖.

Very best of luck tomorrow. Will be of you 👍 X

[Cherylclaire Forum Support in reply to Foggyme]

Found it Foggy, thanks a lot. Probably biased in favour of GP because I have invested so much time and energy (and faith) in trusting her to help me. It's been over two years now since I first went, and from what I have read, that isn't even very long ! She once said she would not give up on me, but now appears to have backed off. I can't do this all over again with someone else, I don't have the heart left. I'm guessing you've been here.

[Foggyme Administrator in reply to Cherylclaire]

Yes...I've been there too. Many here have, so we all know how you must be feeling. Having no heart left for the fight comes from feeling so incredibly ill...and ground down by the medics who we trust to help us.

Two years is so long without proper treatment...suggest you give it one more go...with evidence (as per previous reply) - perhaps put it all in writing and submit the letter before your appointment...

And perhaps the only way forward is self-injection...as all else seems to be failing you. It's what I did in the end...many here have take this route...and reported being better for it.

Big hugs and large helpings of heart to you ❤️❤️❤️❤️❤️

[Cherylclaire Forum Support in reply to Foggyme]

Love your crossness.

[JGBH]

Hi Cherylclaire,

All of us on this forum totally understand you and the way you feel. By now you are aware so many people here give incredibly helpful and supportive advice. Foggyme (as well as many other members) has pointed you in the right direction. So go ahead, don't worry and push (politely, always... but you are aware of that) and demand the treatment that has been denied you. GPs make me very angry indeed with their reluctance to "want" to understand.... I now believe they are simply not bothered really. It has always surprised me the way they seem to follow the guidelines that deny treatment to patients but then seem totally unable to follow any guidelines that recommend specific treatment to patients. It's what I call a blinkered mindset! That is being obtuse, arrogant and unwilling to know. They have NO excuse, except that perhaps they are in the wrong job.

Of course they rely on patients becoming low while fighting to obtain help, in the hope that the patients will eventually "give up".... so PLEASE don't do that... keep on fighting till you get what you need.

Good luck for tomorrow.

[Cherylclaire Forum Support in reply to JGBH]

Not given up yet. Took your luck with me. It helped.

Thanks

[Sleepybunny]

Hi,

good luck and hopefully your GP will listen

I had many years (nearly 20) of being symptomatic, slowly deteriorating and fearing dementia and neurological decline and eventually had to self treat. I had supplied plenty of b12 info to GPs.

I no longer have complete trust in GPs.

[Cherylclaire Forum Support in reply to Sleepybunny]

I understand why. This all takes its toll. Glad you're here.

Much love and thanks.

[Cherylclaire Forum Support]

OK and not done yet...... see my latest post

Thanks