Can anyone help with a letter please. - Pernicious Anaemi...

Pernicious Anaemia Society

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Can anyone help with a letter please.

Nonameme profile image
5 Replies

Just returned home after visit to physiotherapist and I am afraid I let her have both barrels!

I am sick to death of hearing my daily routine is the’wrong kind’ of exercise! By the end of each day I feel I am dying and cannot move another muscle let alone stand at the kitchen sink throwing my legs all over the place! Even with the help of the sink my ankles give way and over I go! Shall I do as instructed and call 999 at the outcome - no of course not I am not stupid enough to exceed my limitations even if they say I should.

I told her I am done with GP’s who just read from Dr Google when they have forgotten what they learned and are not interested in learning anymore. -I know my own body better than them it’s been mine for79 years.

I KNOW I probably have Pernicious Anaemia as all the signs have pointed in that direction for years and further back still if you count what I remember about my parents. But THEY know better-they who refuse to look at different parts of a body as a whole.

As many of you I know know so much more of this illness than those who think they know it all. Bit jumbled that’ll be the brain fog then (the what)!

Seriously though I have reached a point where for my health’s sake I need to do more for myself. I have most of the recommended reading and after last B12 at181 (lower limit is 180 so normal no action needed) no help available there.

Other problems all point in this direction they could have used me to write the books on PA/B12.

I have started SI EOD so hopefully soon some signs of improvement I look such an idiot at bedtime with my furry Christmas slippers in this heat!

My diabetes 2 is improving to nearly pre-diabetes but still manages to be the cause of stone cold feet and legs and pins and needles and my excruciatingly painful ankle although broken and sprained in the past cannot be arthritis but also diabetic neuropathy even though refusing to even Xray.

Having recently been investigated because of urogenital problems and incidentally being discovered with several haemangeoma on my spine on 3/4 vertebra which have apparently been fine over the past 5 years even though never diagnosed despite awful back pain being uninvestgated ever!

Enough of that I know you get the picture and the reason I stormed out saying watch the headlines and know you are part of the reason which of course I should not have said but such a relief nevertheless. It is how I feel -I do not know where I will get the strength to draw my next breath.

I have no access to a GP. I wrote an official complaint in MaY which I was assured would be dealt with within 6 weeks and am still waiting. Following test results which have appeared on my notes with suggested prescriptions these have not been actioned even though it says patient to be reassured and or contacted - nothing. I cannot change GP as rural and no others with in reach

OK finger dead and still no carpal tunnel surgery in sight dominant hand I declare this rant over!

WAKE UPiam going now!

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Nonameme
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5 Replies
Sleepybunny profile image
Sleepybunny

Hi,

I'm so sorry to read about the difficult time you are having.

I also resorted to treating myself when NHS refused to treat me.

How to write letters to GPs about B12 deficiency

Link below has letter templates.

b12info.com/writing-to-your...

Have you talked to PAS?

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

There is a PAS members helpline.

pernicious-anaemia-society....

PAS website has lots of useful leaflets. Some forum members print them out to pass to GP.

pernicious-anaemia-society....

Do you have a PAS support group nearby?

I think most meet online and some meet in person. They can be good places to swap information.

If you scroll down page in link below it gives dates of next PAS meetings.

pernicious-anaemia-society....

Have you considered talking to your local MP?

MPs website should have a number or online contact form to get in touch with caseworkers.

Also your MS if in Wales or MSP if in Scotland (Health matters are devolved in Wales/Scotland).

Maybe leave a review on Care Opinion website.

careopinion.org.uk/

Put "B12 deficiency" in search box to find other stories about B12 deficiency.

Thread about Patient Safety, has links for those having difficult health experiences with B12 deficiency.

healthunlocked.com/pasoc/po...

I'm not medically trained.

pitney profile image
pitney

I would get your Folate checked too , if your GP will not do it you should be able to find a local pharmacist who will do it privately ,the one near me is now doing all sorts of blood tests for around £10 to £15 ( vitamin checks)well worth it if you can manage to do it.

Enuffisenuf profile image
Enuffisenuf in reply topitney

Could you share the name of the pharmacy you use please.

pitney profile image
pitney

I use a small pharmacy called Jephson in a village in Wiltshire but I believe Blue Horizon have teamed up with Superdrug and now do vitamin blood tests I think they also do home visits to do blood tests but I dont know the cost, you could have a look at the website . All best wishes👍

Bellabab profile image
Bellabab in reply topitney

nhs.uk/services/pharmacy/je...

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