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Pernicious Anaemia Society
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Stunned (in a good way)!

I posted a week or two ago because my GP had dismissed my theory of some of my MS symptoms being potentially B12 related and another doctor (whom I accidentally named in the post and had my post stopped, ahem) had responded to my email by phoning me and saying he thought I was right...

So I'd written to my GP with a well referenced letter explaining why I had disagreed with her assessment that PA and B12 deficiency had been ruled out in my case. She's just phoned me and I'm completely stunned - she'd emailed my letter to the consultant haematologist and he had agreed with me (!!) and wants to start me on trial injections every other day - he even wants me to do MMA and homocysteine tests first, although I had to tell her that unfortunately I've been supplementing since seeing her with a sublingual methylcobalamin 1000 micrograms, so she's going to tell him that and see what he says... she sounded completely humbled, wanted to know the name of Martyn Hooper's book that I'd showed her and said that she's going to find out about this and tell everyone!! I've never felt so vindicated :) Just hope I haven't messed everything up with my sublingual supplements. She said she would have done the same since she had basically told me I was wrong about the B12 - but I should have known better. I thought I should report a positive happening - just shows you, it's worth writing a letter if you have the energy!

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I am so pleased to read this outcome for you - and that the GP took it on the chin.

Well Done!

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Thank you! Yes, I was impressed that she was able to 'take it on the chin' as you say, not all GPs can. I was very polite in my letter, saying things like 'I hope you didn't think I was trying to undermine your authority when I disagreed with you, the reason I did was this...'

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Would it be possible for you to send me a copy of the letter you sent. I believe I have been misdiagnosed with MS for years I am trying to get a letter together stating the lack of testing no mma homosistin. Doctors are just not listening to me. They think am MRI SCAN sufficed wasting my career, health and driving me nuts with the attitude of some GP S. Please help me out.....

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Hi @toph, so sorry you're going through that. I can, but it is quite specific to my situation so it might not be quite right, but you could always change bits of it! I actually sent a first letter too, which didn't quite persuade her. The second one is quite long! Can I attach a word doc in a message here?

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I have sent you my email address privately and i will keep you posted as to any results

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I'm going to do it as a new post as Foggyme suggests below - might be of use to more folks, if it is of any use at all!

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Hi ktwing that's absolutely brilliant...

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Can anyone tell me whether it would be within forum guidelines or not to post the contents of my letter here for toph or others, with all names removed (apart from the names of references where my info comes from)? I'd be happy to if it would help anyone else, but don't want to if it isn't ok! I certainly wouldn't have been able to write it a month or two ago and it seems really unfair for ill people to have to try to do this themselves.

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Hi ktwing. Really pleased about the B12. Well done you, and your GP for eventually listening πŸ˜„.

Okay to post your letter (with your and doctor’s names redacted), if you feel comfortable doing this.

Thank you for sharing....may help some folks.

Good idea to put it up as a new post so that more people will see it, and give the post a heading that identifies what it is (i.e. copy of treatment appeal letter to GP).

πŸ‘

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Okay thank you, I'll do that :)

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KT

I'm new here and seen your story. Haven't been able to find the copy of the letter.

I'll soon tell my story. It is AMAZINGLY familiar to many here. But it is 4:30 In the morning and I just don't have the energy to do it now.

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Interesting that it was a female GP. For a completely different issue I saw the most arrogant, contemptuous new (male) GP I've ever experienced (since the last one). Funny how the best results have been when I've brought my husband with me. I'm a very successful professional and breadwinner of the family, but it helps to bring along a man. Sigh.

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πŸŽ‰πŸ‘πŸ‘πŸ»πŸ‘ŒπŸ€—βœŠπŸŽŠ

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WOW! Absolutely wow. Fantastically well done you.

Don't forget to look-up LDN ... wunderbar for autoimmune disorders. But ... wow!

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Here is the link to my post of the letters I sent my doctor: healthunlocked.com/pasoc/po...

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Brilliant! So glad to hear about this. Wonderful when a doctor listens and is prepared to admit they may have been wrong.

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Hi,

Great to hear a good news story. Hopefully your efforts mean that another GP has been educated and now has a better understanding of B12 deficiency.

Your GP might be interested in knowing that PAS (Pernicious Anaemia Society) have a section on website for health professionals . Health professionals can join PAS as Associate Members for free. See next link.

pernicious-anaemia-society....

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Yes, I put a link to it in my letter to her, and in an email she asked me to send with details of Hooper's book!

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I feel I should also say, although this felt like a huge success and was the opposite to what I expected from this phonecall, there's a chance that they'll not give me injections unless the tests show something significant, which I might have messed up by taking sublinguals in my despair. The GP also said that although the guidelines say 'every other day until no further improvement', they might not be able to do that for more than a couple of weeks and then it might be downgraded to every two months. Still, I'll see what happens and might be able to argue my case, or even self-inject. At least having had my initial injections by a medical professional would be a good start!

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Hi,

"GP also said that although the guidelines say 'every other day until no further improvement', they might not be able to do that for more than a couple of weeks and then it might be downgraded to every two months"

The BSH Cobalamin and Folate Guidelines mention a review after 3 weeks of loading doses on the neurological regime so I think they should be able to do at least 3 weeks of every other day.

b-s-h.org.uk/guidelines/gui...

I don't understand why GP said that they might only be able to do a couple of weeks as a time limit for loading doses on the neurological regime is not included in BNF, only that it can continue until improvement stops. You might be able to point this out to them if they try to restrict loading doses. Your GP will probably have a copy of BNF British National Formulary on their desk or bookshelf. B12 treatment info is in Chapter 9 Section 1.2 It's possible to get own copy of BNF from good bookshop or internet retailer.

bnf.nice.org.uk/drug/hydrox...

Might be worth keeping a symptoms diary when B12 treatment starts, to prove that symptoms are improving. It might take some people weeks even months before they show improvement especially if neuro symptoms are severe.

I am not medically trained.

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That's great, thank you.

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Yay! Just had a phonecall from my doctor - apparently since last week there have been discussions between several consultants and it's been agreed to start me on every other day injections tomorrow! I was worried that because I'd been taking sublingual supplements, they wouldn't be able to do MMA and Homocystine and would refuse to treat me without that, but they've agreed instead to let me be reviewed by the neurology consultant next month, who examined me in the summer and so has some idea of what improvement would look like. In any case, at least I'm able to get initial injections done by medical professionals, so feeling quite relieved :-)

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