Hydroxo needed in Edinburgh

[Galadriel1]

Hi All, is there anyone in Edinburgh area using Hydroxo who can lend me a vial to tide me over? I have ordered from Germany but won't get here on time (I leave on Wed) I am due my 2 weekly injection on Fri but am going on train to Edinburgh on Wed. Dr has sent me an official letter to tell me that they will not give me it early (only 2 days) and I must make an appointment for my return to have my injection. I had told them I am away for more than 10 days and I needed to have it before I go because it would mean me not getting it until it is overdue by 10 days and I would be due one again on the Fri which they will not give me, they insist on the two weeks in between even when I have one late. Means I miss one.

[Galadriel1]

All sorted now.

[Foggyme Administrator]

I can post some to you tomorrow if you'd like to Private message me with the address you want it sending to. Off to bed now so will check forum / PM's first thing in the morning.

Don't think much of your doctor!

[Galadriel1 in reply to Foggyme]

No me neither SI starting as soon as my order arrives.

[Foggyme Administrator]

Oh...just spotted your post...it must have appeared while I was typing!

Pleased you got sorted x

[Galadriel1]

As soon as I get back complaint to GMC and anyone else I can think of and will try to find /set up a local support group and make if difficult for Dr's to ignore us.... Just back from being humiliated once again at the Dr's, you'd have thought I was asking for heroine! Nurse asking if she can give me in morning, not holding any hope the said Dr is one of the 2 'practice partners', he is an asian male and the other 'partner' is an asian female and she does not go against anything he says...... she is supposed to be my GP but mild, meek and makes no decisions! Only got referred to haematologist because I could pay for it! Told nurse today my symptoms are much worse and I am deteriorating fast since going on 2 weekly and should be returned to every other day until no further improvement and they need to read updated guidelines. She thought the 'normal' was 12 weeks pointed out it was 8 weeks with neuro and mine are severe but seem to be getting ignored! Have not had referral to neurologist despite recommendation from the very expensive haematologist who seemed to think it was not down to the B12! Aaargh! They make you want to scream £250 for 15 minutes and doesn't know his stuff! Sorry needed that rant!

Thank you everyone for the support. It is appreciated!

[Foggyme Administrator in reply to Galadriel1]

Gladriel1. This is just so dreadful. You could try writing to the doctors or practice manager, stating your symptoms, what treatment you require, and attach all the current guidelines to support your arguments. Ask for the letter to be put on your file. And ask for a written response from them stating why they are not treating you and ask them to provide medical evidence to support their stance. And of course, they won't be able to. They may take more notice of this 'official' approach, since being sued is in the forefront of medic's minds these days!

Judging by what you say of your symptoms, I think you're right - back on alternate day injections is probably what you need.

You are well within your right to insist that you have a referral to a neurologist. And I'm at a complete loss to understand why they are ignoring the advice of a haematologist!! It just beggars belief and if I was you, I'd rant as well 😀.

I've also paid for consultations and got very similar results, so know just how you feel 😡😡😱😱.

And the nurse needs to update herself PDQ.

There, I'm having a rant on your behalf!

Are you able to change to another GP surgery?

Anyway, hope you have a lovely time in Edinburgh and manage to leave all this stuff behind, even if only for a few days 😄.

Please post again and let us all know how you get on and rant away anytime.

Take care xx