Update post - not seen GP properly yet, but B12D is not even on my notes as something I have!!! & am told 'it's just one of those things'!!

[eclilley]

A quick update following my post last week.

I have yet to actually see the GP to properly address all these ongoing & worse symptoms, and to address that they could be linked back to B12D & my inadequate treatment - going today. Had other things that were more acute on Fri (check for a DVT - clear, but blood test site = v big haematoma & sore, so more blood tests today to check clotting, my lymphocytes were high in March etc.).

But, a couple of things, that I think are dreadful...

Spoke to out-of-hours GP on Sat evening (I wish she was my GP, she suggested going back for more bloods & said B12 could be causing many of these symptoms) - and found out that B12D is not even on my notes of things I have - only migraines & IBS is there!!!

Looked at my records - when I see the nurse for my now 8-weekly jabs that they agreed to, it states next to the entry "patient specific direction".....presumably they are trying to say there is no clinical reason for it?!

Spoke to the GP this morning to get appt today, (out of hours advice & I have some worse pains, chest discomfort & pain on RHS & in opposite part of my upper back, still bad left leg pain behind knee, returning nerve head pain etc).

I said about B12 and that I think it's a big factor as not had the correct treatment, and having had a year not treated and then far apart jabs etc. I said it was never investigated further at time it was found, I'd had worsening symptoms for about 18 months, I had lots of neuro symptoms, IF neg but not looked into, no referral etc.

She said, "we don't usually investigate at the level yours was at to be honest, if the IF is negative it's just one of those things, we just replace it....." !!!!!

I didn't say anything except, 'oh'. I am a bit dumbfounded, though tbh, I kind of knew that (esp in Glos.). But surely if IF is negative, there's more need to investigate as the cause is unclear?! NICE guidance says refer to haematologists & EoD til no further improvement. It's going to be hard to confront & get anywhere if that is their attitude, & I have the issue that the low B12 level found (133) was in Aug 2018. Also that I had a B12 jab last Monday, so I am guessing they will even more say that it can't be B12 causing the issues as I have just received it.

Obviously, I want the further blood tests now as I want to know if the clotting and other things are normal. Assuming they are, the next thing is surely to try EoD B12's, as I have responded well in the past....?!

Wish me luck for my appointment!

[Nackapan]

Yes I do wish you luck at your appointment. It's on my notes requested b12 more frequently so the nurse has said some time ago

Also I'm taking full responsibility for sc at home

Asked for higher frequency as they concerned about giving it.

I think to avoid all liability.

I agree diesnt give much confidence

Like yiu say all alterative causes shoujd be looked into

Something is causing all of your symptoms. It's their job after all to listen snd investigate.

[eclilley in reply to Nackapan]

Thank you. I will update later!I feel I may have a complaint to CCG/PALS in me....

[eclilley]

This is my current array of symptons to try & discuss.....!

[topazrat]

My notes say 'patient specific direction' after each jab, and I have a positive IF test. (well 2 positive tests, because they really, really wanted to make sure lol) So I think its just something that they always write and nothing to do with clinical reason.

[eclilley in reply to topazrat]

Oh right, that seems odd when you have a positive IF/PA. I just felt so angry about it all I assumed they were being 'evaduve'. It does make me so cross, how debilitating this condition is and yet how little known/talked about/treated.

[Cherylclaire Forum Support in reply to topazrat]

Well, with intrinsic factor positive positive, I'm hoping that "pernicious anaemia" is also on your notes, topazrat ?If so, please ask for a printout and keep it safe.

This may well prove to be crucial.

[topazrat in reply to Cherylclaire]

Yes PA is on my notes

[eclilley]

So, my appointment resulted in agreement to do blood tests again to check out any other possible issues as highlighted.Waffled through all my ongoing afflictions pains etc.

Said my brother has B12D, IF neg, same surgery.

Said I had responded well to jabs previously, most things getting better, though they were not really often enough.

Said I hadn't ever had the actual guideline treatment as had lots of neuro symptoms when it was found.

She was on call so it was a bit curtailed.

She has said she will write to the haematologist to get advice on it all & on how often I should have them. So I think I will quickly write to her covering everything, & suggesting if the bloods are normal & no other explanations, can they please start a trial treatment of EoD injections as there's strong possibility it's connected....

Meantime, now have to wait til next Thurs just for blood test (I think she decided not to take it herself when she saw the mess she had made of my arm on Friday!).

Not as good nor as bad as I thought. But they seem disinterested in the fact that I can't really physically function.