Has anyone in London had a sympatheti... - Pernicious Anaemi...

Pernicious Anaemia Society

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Has anyone in London had a sympathetic GP or can reccomend a private GP for a proper diagnosis ? ☆♡☆

Kittycaite profile image
13 Replies

Hello all again .

I had a disastrous appointment with the GP yesterday . My own GP is away til September and the GP yesterdaywas rude , boorish , refused to listen to me and completely railroaded me ! I'm having trouble speaking or remembering words at the mo since I have been very unwell for a week . I became very upset and then talking became much more difficult ! She had not read the email with NICE and BMJ guidelines etc and refused to read them while I was there . She keep giving me a countdown of how many minutes I had left ! She was completely dismissive of pernicious anemia as said my blood cells were not enlarged . She did agree to MMA and IF tests which I had this morning . She has also referred me to a neurologist . She had written ' presenting with Neurological symptoms ' on my blood test form but refuses to treat be with injections unless tests show positive.

I had also emailed my Heamtology Team at UCLH . The consultant I saw there last week rang me back today .

He was lovely but was also of the opinion that it was doubtful I had pernicious anemia .I spoke in depth to him of my neurological symptoms . He said that as they UCHL are my secondary carers they cannot prescribe B12 injections there at the hosp and my GP would have to agree them .He did not know about the NICE or BMJ guidelines regarding someone presenting with Neurological symptoms should be treated immediately ! I have sent them to him and can only hope he is able to persuade my GP !

I'm guessing from what I've read on this forum that this is the usual case scenario ! :(

Has anyone had any good GPs or could reccomend a private or other method to get a proper diagnosis in London ?

I'm concerned as my left side is becoming increasingly numb and my speech , balance , coordination are also very poor at mo .

I'm trying to hang in there for a proper diagnosis but considering self injections.

Excuse me if this is rambling !

Many thanks ☆♡☆

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Kittycaite
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13 Replies
butterflyEi profile image
butterflyEi

Hi I am new to this group and am very sorry to read of your difficulties. Do you have a GP walk in centre anywhere near you? The following link may help you find a centre.

good luck I hope you sort yourself some help

nhs.uk/Service-Search/Walk-...

Kittycaite profile image
Kittycaite in reply tobutterflyEi

Thankyou Butterfly Ei.

I seem to remember reading it would be difficult to start a new with new GP practice whilst trying to get a diagnosis . I've read so much the last few days so much is a blur and I can't remember where I read that . My concern is that a walk in clinic would be less help ! But if course I could be wrong on this !! ?

It's such a minefield on top of being really ill.

Thanks for your reply xx

Hillwoman profile image
Hillwoman

I can't recommend anyone, I'm afraid.

What an upsetting experience. At least you did well to get a couple of relevant blood tests out of it, but you may end up having to interpret them yourself (post the results on the forum), given this GP's ignorance.

I know what it's like to have problems with language, when you can't find the right words, or use the wrong ones, just when it's really crucial.

Kittycaite profile image
Kittycaite in reply toHillwoman

Thankyou Hillwoman . I'm very dyslexic but have always been very articulate . Now looking back at my life I realise when I have been ill from blood loss of kidney infections that I have many presenting neurological symptoms at those times.

Finally the bigger is emerging for me . Fingers crossed for swift diagnosis and treatment.

I will post up my results when through,, that's if nasty GP allows me to have them ! .

Many thanks xx

Kittycaite profile image
Kittycaite

Thankyou beginner 1 . Iiincluded the NICE and BMJ guidelines . I'm guessing they are just guidelines ? So if anyone reading this could advise if it is actually law I'd be very grateful !

I would even pay for them as I'm feeling so unwell .

Did your GP listen to you ? I hope you are being properly treated now ? Xc

Kittycaite profile image
Kittycaite in reply toKittycaite

Sorry I just realised that you meant that I could pay for my results !!

Oh confusion reins !! :/

Xx

in reply toKittycaite

GPs are not supposed to charge for printouts of test results. Ask your practice to register to have access to your medical records online, see Patient Online Programme under GP service in NHS Choices.(also ordering repeat prescriptions and booking appts online)

I have access to mine and can see test results as soon as they return.

Kittycaite profile image
Kittycaite

I will do when they are back and will also join PAS . Thanks xx

ndodge profile image
ndodge

My heart goes out to you having a horrible experience with that dismissive rude GP and still no help. Many people on this forum have had to resort to buying and injecting themselves with B12 just to get what their bodies desperately need. I can't believe how the medical community reacts to B12 deficiency problems, generally speaking.

Best of luck to you! ;) There are many knowledgeable people on this forum who can inform you how, where and what kind of B12 to buy.

Kittycaite profile image
Kittycaite in reply tondodge

Thank you NDodge .

I'm going to see another GP in my practice tomorrow . This time I'm bringing a friend who is also a social worker and will have more evidence to give them and will send it before via email too .

Fingers and toes crossed that they start treatment immediately as I'm really not well and very shaky today . I'd rather not go into AnE :(

Xx

ndodge profile image
ndodge in reply toKittycaite

Hopefully they will see how unwell you are! I'll be thinking of you with everything crossed for immediate treatment, kittycaite. Taking a social worker with you who can give evidence is fantastic!

Please let us know how it goes.xx

jillc39 profile image
jillc39

good idea to take someone with you - I did - and it was very useful to have another voice - when my gp seriously said ' I wont give you another b12 because you will overdose' my daughter could state correctly that this is impossible because b12 is a vitamin. This thread started with a request for a sympathetic gp - all I can say is not my one!

Kittycaite profile image
Kittycaite

Thankyou all . I will post up how it went . I'm putting out for solutions ☆☆☆

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